Aa
Normal CBC, TSH, multiple painful lymph nodes, neck, legs, arms increasing in size
2 years ago, I first brought to the attention of my GP painful lumps mainly in my legs. He didn't examine them (early covid days) but said they were probably lipomas given I already have some at my ankles. At another visit, I insisted he look because the lumps felt different than lipomas and they were getting bigger and more painful. There were some in my arms at that point as well. He was not impressed but noted it in my chart.
GP retired.
Two years later I've lost 12 pounds (10% of my body weight) without trying. Also have hot flashes and night sweats but I'm 53 y/o female and perimenopausal so chalked that up to hormonal changes.
However, in the past month I noticed pain when swallowing. My neck has some tender areas and slight swelling. I'm not sleeping well so I'm tired all the time. Sometimes I wake up sweating. Not much appetite lately. Often light-headed and irritable.
New GP examined the lumps and confirms they do not appear to be lipomas, but lymph nodes and ordered CBC & TSH labs. She also ordered CT of the thyroid since that seems inflamed and tender in some spots.
She said it is most likely infection or thyroiditis but considering weight loss, increased size of lymph nodes over time, etc, she said we need to rule out cancer.
CBC was normal. TSH3/4 also normal.
With a normal blood work I would think that rules out infection, thyroid AND cancer, no?
Or is it possible cancer is still on the table?
CT of thyroid was done but waiting for follow up visit to get results.
Specific areas where nodes are noticeably enlarged and painful are: behind knees running up back of thighs, inner elbows, neck. There are a few areas of increased skin pigmentation that have appeared over the past few years (face, arm, forehead). There appears to be another swollen area (not sure if it is a lymph node) in my abdomen and I've experienced some constipation.
Just 2 months ago I had terrible abdominal cramps, pain, some bleeding. GI doctor suggested diverticulitis although I never had that before. He rx'd antibiotics and a colitis diet of brown rice/potatoes, etc and it seemed to resolve in a few weeks. My typical diet is relatively healthy (mainly organic or home grown vegetables, very little packaged or restaurant food, occasional non-caffeinated soda).
In the past month my ortho rx'd a course of prednisone for pre-existing back pain (failed SI fusion, waiting for treatment plan and possible revision surgery). That did not happen to affect any of the lymph nodes and although in the past steroids have provided relief from back pain/inflammation, this time they only seemed mildly helpful for a day and a half.
There are other painful lumps forming in my legs which do not seem to correspond directly to the lymph nodes, mainly in my calves and thighs. It's terribly painful mostly at night. I can't feel the definitive outline of these as I can the obvious lymph nodes but if pressing hard enough I can feel the lump.
Confused since the lab results seem normal but symptoms are getting progressively worse.
WBC 9.3, RBC 4.67, Hemoglobin 14.1
Platelet count 425, platelet volume 10.6
Neutrophils 6.3/ 67.8%, Lymphocytes 2.2 / 24%, Monocytes 0.5/ 5%,
Eos 0.2/ 1.8%, Basophils 0.1/ 1.2%, Immature granulocytes 0.02/ 0.2%
TSH 0.53 T3 3.82 T4 1.17
For reference, 2019 TSH w/Rflx FT4 was 1.9 (don't know if this is helpful or not)
In 2019 my AST/SGOT was low: 8. This has not been rechecked since (yet, anyway).
In 2020, ANA was normal, CRP 3
I know, these old numbers are pretty useless without updated tests.
Any insight appreciated.
(NOTE: I have multiple herniated and bulging discs. Failed SI fusion. Spinal cord stimulator implant in place since 2018 in case it's relevant)
GP retired.
Two years later I've lost 12 pounds (10% of my body weight) without trying. Also have hot flashes and night sweats but I'm 53 y/o female and perimenopausal so chalked that up to hormonal changes.
However, in the past month I noticed pain when swallowing. My neck has some tender areas and slight swelling. I'm not sleeping well so I'm tired all the time. Sometimes I wake up sweating. Not much appetite lately. Often light-headed and irritable.
New GP examined the lumps and confirms they do not appear to be lipomas, but lymph nodes and ordered CBC & TSH labs. She also ordered CT of the thyroid since that seems inflamed and tender in some spots.
She said it is most likely infection or thyroiditis but considering weight loss, increased size of lymph nodes over time, etc, she said we need to rule out cancer.
CBC was normal. TSH3/4 also normal.
With a normal blood work I would think that rules out infection, thyroid AND cancer, no?
Or is it possible cancer is still on the table?
CT of thyroid was done but waiting for follow up visit to get results.
Specific areas where nodes are noticeably enlarged and painful are: behind knees running up back of thighs, inner elbows, neck. There are a few areas of increased skin pigmentation that have appeared over the past few years (face, arm, forehead). There appears to be another swollen area (not sure if it is a lymph node) in my abdomen and I've experienced some constipation.
Just 2 months ago I had terrible abdominal cramps, pain, some bleeding. GI doctor suggested diverticulitis although I never had that before. He rx'd antibiotics and a colitis diet of brown rice/potatoes, etc and it seemed to resolve in a few weeks. My typical diet is relatively healthy (mainly organic or home grown vegetables, very little packaged or restaurant food, occasional non-caffeinated soda).
In the past month my ortho rx'd a course of prednisone for pre-existing back pain (failed SI fusion, waiting for treatment plan and possible revision surgery). That did not happen to affect any of the lymph nodes and although in the past steroids have provided relief from back pain/inflammation, this time they only seemed mildly helpful for a day and a half.
There are other painful lumps forming in my legs which do not seem to correspond directly to the lymph nodes, mainly in my calves and thighs. It's terribly painful mostly at night. I can't feel the definitive outline of these as I can the obvious lymph nodes but if pressing hard enough I can feel the lump.
Confused since the lab results seem normal but symptoms are getting progressively worse.
WBC 9.3, RBC 4.67, Hemoglobin 14.1
Platelet count 425, platelet volume 10.6
Neutrophils 6.3/ 67.8%, Lymphocytes 2.2 / 24%, Monocytes 0.5/ 5%,
Eos 0.2/ 1.8%, Basophils 0.1/ 1.2%, Immature granulocytes 0.02/ 0.2%
TSH 0.53 T3 3.82 T4 1.17
For reference, 2019 TSH w/Rflx FT4 was 1.9 (don't know if this is helpful or not)
In 2019 my AST/SGOT was low: 8. This has not been rechecked since (yet, anyway).
In 2020, ANA was normal, CRP 3
I know, these old numbers are pretty useless without updated tests.
Any insight appreciated.
(NOTE: I have multiple herniated and bulging discs. Failed SI fusion. Spinal cord stimulator implant in place since 2018 in case it's relevant)
COMMUNITY LEADER
Hi, you've been suffering a lot, so I'll try to go the extra mile to help.
First off, there's not much reason to suspect a lymphoma.
Does a normal CBC rule out infection? No. Chronic or reactivated Epstein Barr virus wouldn't (and that can also harm the liver, btw). Did you happen to have very severe mono back when?
What is very surprising is that you don't mention any ultrasound results. None were done? That could explain why you are having *severe* node pain, which is not usual.
After this, things are very complicated. There is no easy answer. Each specialist will only see their own specialty. I'll suggest to you that the best way to proceed is to assume that everything has the same root cause - and that includes the back issues (unless the cause there was some accident or other trauma).
First off, there's not much reason to suspect a lymphoma.
Does a normal CBC rule out infection? No. Chronic or reactivated Epstein Barr virus wouldn't (and that can also harm the liver, btw). Did you happen to have very severe mono back when?
What is very surprising is that you don't mention any ultrasound results. None were done? That could explain why you are having *severe* node pain, which is not usual.
After this, things are very complicated. There is no easy answer. Each specialist will only see their own specialty. I'll suggest to you that the best way to proceed is to assume that everything has the same root cause - and that includes the back issues (unless the cause there was some accident or other trauma).
3 Comments
I had mono as a teen. I was Dx'd with Reynaud's in 2019 while on propranolol for hypertension and Maxalt for migraine and being outside in the cold. My fingers turned blue. It happened a few times so Neuro said it was Reynaud's.
No lupus or other autoimmune in my immediate family.
Cardiovascular disease (stroke, heart attack) is prevalent in family hx.
Tested for lyme in 2018. I don't understand the results. The dermatologist said it was negative but here is what Labcorp report shows:
Lyme IgG/IgM Ab 1.04 High
IgG P41 Ab. Present Abnormal
All other bands absent/ negative.
2017 T3 was low and platelets high.
2015-2016 leukocytosis (13k) (neutrophils). No known infection at that time. Hematologist ran several tests including genetic. Started immunotherapy for environmental allergies and WBC came back down by 2017.
I live in the southeastern United States. Tick country. I live in rough conditions in an RV on a friend's property. No laundry facilities so clothing is hung on a line tied between trees. Had scabies in 2018 after visiting a friend in public housing. That resolved.
Bit by bedbugs in 2017 while staying at a hotel after a neuroablation.
There was a car accident in 2010. Some other trauma as well. T6-T12 herniated (T8-T9 6mm impingement on cord). C3-C7 disc bulges with bone spurs. L4-S1 disc bulges with L5-S1 seeming to be near a nerve root although neurosurgeon does not think so. They have been concentrating on SI joint which had been unstable which is why the SI fusion was done in 2017. Surgeon at that time noted that he "relocated a nerve" although I do not know what that means.
Initially I had relief from the shooting pain down my left leg but over time, the pain seemed to migrate lower from the low back to the buttock. The spinal implant was done in 2018. That seemed to offer some relief. I was able to walk without a can for 8 minutes rather than 4. Quite an improvement. I tried to return to part time work but within a few months, sitting became excruciating. It was about this time I noticed the lumps in my left leg. They are in both legs but as the left leg has been the bane of my existence, my thoughts were that the nodes were inflammatory responses to the various surgeries and I didn't notice the ones in the right leg at first.
Then I noticed the nodes in my arms and neck.
My thoughts are that the constant pain from my left buttock to my foot may not necessarily be caused by SI joint disfunction or failed fusion. While my previous injuries already are a source of pain, it may be that this side was just more sensitive to the increased size of the nodes. When the spinal implant if off, the intense shooting pain down my sciatic nerve returns. With it on, this pain is only intermittent.
There is however constant burning, tingling and numbness in my left foot, calf up to the knee. Constant pain in my left thigh and hip. Xrays, MRI and CT have been done thoracic, lumbar spine recently which is why surgeon thinks the damage causing the pain is the failed SI fusion.
No ultrasound has been done yet on the nodes. I have no insurance so getting health care has been a struggle. My disability case was returned unfavorably. I appealed, and have been fighting for years which is why I had to sell my house and move into an RV. I'm waiting for yet another hearing and do have legal representation -- but that's another story.
So my previous GP which was afforded to me by a private charity was not interested in the nodes. He was hesitant to do anything with me due to me being in pain management. He would say that I was "above his pay grade". He has since retired but the new GP is concerned and seems to be interested in helping me. I will no longer have access to the charity care in a few weeks so I'm trying to focus my efforts where it will be most effective.
Sorry for the data dump. I'm just trying to narrow down where to focus. Thank you for your assistance.
No lupus or other autoimmune in my immediate family.
Cardiovascular disease (stroke, heart attack) is prevalent in family hx.
Tested for lyme in 2018. I don't understand the results. The dermatologist said it was negative but here is what Labcorp report shows:
Lyme IgG/IgM Ab 1.04 High
IgG P41 Ab. Present Abnormal
All other bands absent/ negative.
2017 T3 was low and platelets high.
2015-2016 leukocytosis (13k) (neutrophils). No known infection at that time. Hematologist ran several tests including genetic. Started immunotherapy for environmental allergies and WBC came back down by 2017.
I live in the southeastern United States. Tick country. I live in rough conditions in an RV on a friend's property. No laundry facilities so clothing is hung on a line tied between trees. Had scabies in 2018 after visiting a friend in public housing. That resolved.
Bit by bedbugs in 2017 while staying at a hotel after a neuroablation.
There was a car accident in 2010. Some other trauma as well. T6-T12 herniated (T8-T9 6mm impingement on cord). C3-C7 disc bulges with bone spurs. L4-S1 disc bulges with L5-S1 seeming to be near a nerve root although neurosurgeon does not think so. They have been concentrating on SI joint which had been unstable which is why the SI fusion was done in 2017. Surgeon at that time noted that he "relocated a nerve" although I do not know what that means.
Initially I had relief from the shooting pain down my left leg but over time, the pain seemed to migrate lower from the low back to the buttock. The spinal implant was done in 2018. That seemed to offer some relief. I was able to walk without a can for 8 minutes rather than 4. Quite an improvement. I tried to return to part time work but within a few months, sitting became excruciating. It was about this time I noticed the lumps in my left leg. They are in both legs but as the left leg has been the bane of my existence, my thoughts were that the nodes were inflammatory responses to the various surgeries and I didn't notice the ones in the right leg at first.
Then I noticed the nodes in my arms and neck.
My thoughts are that the constant pain from my left buttock to my foot may not necessarily be caused by SI joint disfunction or failed fusion. While my previous injuries already are a source of pain, it may be that this side was just more sensitive to the increased size of the nodes. When the spinal implant if off, the intense shooting pain down my sciatic nerve returns. With it on, this pain is only intermittent.
There is however constant burning, tingling and numbness in my left foot, calf up to the knee. Constant pain in my left thigh and hip. Xrays, MRI and CT have been done thoracic, lumbar spine recently which is why surgeon thinks the damage causing the pain is the failed SI fusion.
No ultrasound has been done yet on the nodes. I have no insurance so getting health care has been a struggle. My disability case was returned unfavorably. I appealed, and have been fighting for years which is why I had to sell my house and move into an RV. I'm waiting for yet another hearing and do have legal representation -- but that's another story.
So my previous GP which was afforded to me by a private charity was not interested in the nodes. He was hesitant to do anything with me due to me being in pain management. He would say that I was "above his pay grade". He has since retired but the new GP is concerned and seems to be interested in helping me. I will no longer have access to the charity care in a few weeks so I'm trying to focus my efforts where it will be most effective.
Sorry for the data dump. I'm just trying to narrow down where to focus. Thank you for your assistance.
*cane, not can. (wish there was an edit option)
EMG, Nerve conduction study done last month were normal. Just tested top of legs to bottom of feet. My left leg is weak but I CAN walk on heels, toes. No foot drop.
Also bone scan done last month. Some increased signal in pelvis, SI region, shoulder, mid spine.
Also bone scan done last month. Some increased signal in pelvis, SI region, shoulder, mid spine.
COMMUNITY LEADER
Do you have a family history of odd immune system dysfunction? Lupus, Raynaud's, Rheumatoid Arthritis, anything like that?
2 Comments
A second cousin once removed has primary immune deficiency requiring IgA infusions monthly.
Also Ulcerative colitis and RA. Her mom (my mother's aunt) had lymphoma. My mom's other aunts and cousins had brain, esophageal, lung, stomach cancer. Some were smokers/drinkers. My primary dr (the resident) suggested lymphoma needed to be r/o so that is what led me here. Once you painted the picture with MCAS of course that fits more readily. As you said, it all comes down to the immune system.
Also Ulcerative colitis and RA. Her mom (my mother's aunt) had lymphoma. My mom's other aunts and cousins had brain, esophageal, lung, stomach cancer. Some were smokers/drinkers. My primary dr (the resident) suggested lymphoma needed to be r/o so that is what led me here. Once you painted the picture with MCAS of course that fits more readily. As you said, it all comes down to the immune system.
Abdominal pain, brain fog, Cramps, Tachycardia. The more I read on MCAS/mastocytosis, the more things are making sense. I feel a sense of relief and yet a little bit of terror.
Previously I had high blood pressure for many years (from mid 40s) but in the last few weeks it has reduced to the point that I no longer need propranolol. This change was quick. I had to drop from propranolol 60ER to propranolol 20 because my BP was getting so low that I was dizzy and bumping into things yet still tachycardic.
Previously Decadron or Prednisone offered some level of relief. What do corticosteroids do with mast cell disorders? Or does it need to be further differentiated before a specific treatment can be honed in on? And do you think that the Ajovy injection from Dec 2018 (monoclonal antibody) may have anything to do with this? Or was that probably just adding gasoline on the fire?
Previously I had high blood pressure for many years (from mid 40s) but in the last few weeks it has reduced to the point that I no longer need propranolol. This change was quick. I had to drop from propranolol 60ER to propranolol 20 because my BP was getting so low that I was dizzy and bumping into things yet still tachycardic.
Previously Decadron or Prednisone offered some level of relief. What do corticosteroids do with mast cell disorders? Or does it need to be further differentiated before a specific treatment can be honed in on? And do you think that the Ajovy injection from Dec 2018 (monoclonal antibody) may have anything to do with this? Or was that probably just adding gasoline on the fire?
COMMUNITY LEADER
Where are you located? It's hard to believe that a doctor (your 1st one) would think that supposed lipomas are painful - and thereby just dismiss your complaint.
COMMUNITY LEADER
Okay, fc, I will be glad to go back and forth with you... until you get burned out :) Most people get burned out and quit, anyway.
So let's see if we can illuminate some things. You seem very sharp and capable. And motivated, and methodical. Hopefully,, you will find it useful to have someone to thrash things out with.
"I had mono as a teen"
But was it severe? I'm getting at whether you might have a hyeractive immune system. By far, most mystery cases turn out to be some immune dysfuction. The immune system can do almost anything. Let's include any mystery infection in with that.
But if not immune, then a rare genetic problem. However, you do have that accident, which needs some thinking. That might be paramount.
Did you have any health oddities before the car accident? That's important.
"in 2019 while on propranolol for hypertension"
HTN because of the pain? Or some mystery reason? You're not overweight. What is your age? Again looking for possible immune dysfunction.
"My fingers turned blue. It happened a few times so Neuro said it was Reynaud's."
Well, maybe.
As far as hypothyroidism? We might think that instead of hypoT causing enlarged nodes, that instead the same immune process that causes hypoT might cause other symptoms as well. If you follow me?
"I live in rough conditions in an RV on a friend's property."
You seem very brave. Were you in that situation when the unexplained neutrophilia happened?
"immunotherapy for environmental allergies"
Aha, there we go. Allergies were severe?
"Sorry for the data dump."
Oh no, not at all. You are what is called "an interesting case", if you don't mind my saying. :) Of course, that's bad for you.
"I'm just trying to narrow down where to focus."
Yep, that is wise. Are you familiar with the diagnostic principle of Occam's Razor? I.e., looking for a common cause to everything. However with you that might be 3 causes: overactive immunity, exposure to pathogens, and the accident trauma (and your physiological reaction to that might involve overactive immunity).
"Thank you for your assistance."
You're welcome.
More to follow...
So let's see if we can illuminate some things. You seem very sharp and capable. And motivated, and methodical. Hopefully,, you will find it useful to have someone to thrash things out with.
"I had mono as a teen"
But was it severe? I'm getting at whether you might have a hyeractive immune system. By far, most mystery cases turn out to be some immune dysfuction. The immune system can do almost anything. Let's include any mystery infection in with that.
But if not immune, then a rare genetic problem. However, you do have that accident, which needs some thinking. That might be paramount.
Did you have any health oddities before the car accident? That's important.
"in 2019 while on propranolol for hypertension"
HTN because of the pain? Or some mystery reason? You're not overweight. What is your age? Again looking for possible immune dysfunction.
"My fingers turned blue. It happened a few times so Neuro said it was Reynaud's."
Well, maybe.
As far as hypothyroidism? We might think that instead of hypoT causing enlarged nodes, that instead the same immune process that causes hypoT might cause other symptoms as well. If you follow me?
"I live in rough conditions in an RV on a friend's property."
You seem very brave. Were you in that situation when the unexplained neutrophilia happened?
"immunotherapy for environmental allergies"
Aha, there we go. Allergies were severe?
"Sorry for the data dump."
Oh no, not at all. You are what is called "an interesting case", if you don't mind my saying. :) Of course, that's bad for you.
"I'm just trying to narrow down where to focus."
Yep, that is wise. Are you familiar with the diagnostic principle of Occam's Razor? I.e., looking for a common cause to everything. However with you that might be 3 causes: overactive immunity, exposure to pathogens, and the accident trauma (and your physiological reaction to that might involve overactive immunity).
"Thank you for your assistance."
You're welcome.
More to follow...
1 Comments
I'm familiar with Occam's razor. When one hears hoof beats, think horses, not zebras. Except when it is a zebra lol (like a couple I know with EDS).
Currently 53. Weight now 123 (down 2 more lbs from 3 weeks ago).
Definitely have an overactive immune system. Drs have tested my ANA/CRP more times than I can count but never found anything indicating RA, SLE, etc. Many suspected autoimmune or with the extensive herniations a possible connective tissue disorder but labs never confirm it. Also have had several traumatic injuries.
Throughout middle school I had repeated strep infections and was put on several rounds of antibiotics. My tonsils were often inflamed to the point that they touched in the back of my throat.
At 12 I was hospitalized to rule out rheumatic fever. All tests were normal. Still, my tonsils were not removed, nor was I treated for allergies. Just antibiotics when I had a severe sore throat and fever. This continued into my 20s when I had my tonsils removed.
At 14 I had mono. The Dr had my mother take me to the hospital. I didn't have to stay overnight but they told her to keep me home from school for a week. I can remember being extremely tired.
By late 20s I developed hypertension. Family history of cardiovascular disease.
My right knee started slipping about 18 mos ago. Dr did an xray and said it is fine for my age. Suggested PT which I did. There is more strength in the knee so it slips less but now it is permanently swollen above the kneecap. If I stand more than a few minutes there is more swelling and pain. That knee was damaged in my 20s (torn medial tendon). Left knee was damaged at age 16 (torn meniscus) but arthroscopic lateral release fixed it and it doesn't seem to bother me often.
"Were you in that situation when the unexplained neutrophilia happened?"
No. 2013 I had a strange illness that was either food poisoning or some unknown virus. By the following year the neutrophilia started but GP at the time assumed it was related to a UTI. The UTI resolved but follow up labs still showed high neutrophils months later. Then, I moved into a shelter. After that I lived with friends and family and later was back in my home after divorce. Neutrophilia persisted so Dr referred me to hematologist. He considered my allergies because with all the upheaval in my life (divorce and moving) I had not kept up with allergy treatments. So he suggested restarting allergy shots and within a year the labs normalized. The only other "new" or out of the ordinary thing I recall within a few years of the neutrophilia was the H1N1 vaccine in 2011 or 2010. I can't recall which.
"Aha, there we go. Allergies were severe?"
Yes, severe allergies. 3 incidents of anaphylaxis. 2 in allergist's office after allergy shots (mold). Needed 2 shots of epi for one of these episodes.
One incident after prolonged exposure to mold while living in an older camper in 2016.
PT suggested piriformis. Tried positions and exercises to alleviate it but that has not helped.
The only position that seems to help is fetal position, lying on right side with 2 pillows between legs to keep knees apart. It doesn't alleviate the pain but it lessens the sharpness that seems to be seated in my left hip/buttock/leg.
As soon as I sit, stand in one place for more than a few minutes or do anything that moves my left leg, especially twisting or pushing outward (seated or lying down) or relaxing inward while lying down intensifies pain.
As for the nodes, I don't know about size with any certainty, but can estimate pea to marble sized. The ones in the back of my knee/thigh do not generally hurt unless I press on them. For both legs, when I press on the nodes my corresponding foot feels pressure and tingling.
Had a follow up visit at GP with the resident from last time and a new attending Dr. The attending Dr is distracted by my perimenopausal symptoms so, of course, wants to put me on SSRIs. I explained my past negative experience with these meds (SSRI and SNRI) while being treated for migraines and depression. He tried to tell me that since this was for something different and a low dose that I shouldn't expect the same negative side effects. I persisted so he said he would not RX Prozac but something that wasn't an SSRI/SNRI.
He noted that he wouldn't want to give me any sort of pain medication.
Of course not -- I told him I'm already on them. That wasn't the point of the visit. For some reason, they seem to get stuck on this --- almost every single Dr.
Anyway, the resident Dr said my thyroid CT was normal. And with normal labs and a normal CT the attending is not concerned about the lymph nodes.
Lo and behold, the attending Dr prescribed duloxetine (SNRI). So either he "forgot" or just lied.
Frustrating.
He also focused on my GI symptoms and suggested crohn's. I've been Dx with IBS for several years. Gall bladder removed several years ago. I know my diet has to be managed carefully. The only other thing I think may be causing those issues would be abdominal adhesions.
They were an issue after a C-section gone awry in 1989. The surgeon didn't mention what went wrong, he just sewed up where he made accidental incisions. I had 2 surgeries to reduce the adhesions. During one, the surgeon noted my bladder was stuck to my stomach wall and my uterus was stuck to my bladder. It was a mess and it felt like it. After the 2nd reduction the surgeon said the adhesions were just at my intestines but they didn't venture in to reduce those as I wasn't having any GI problems at the time and it was risky.
Although the current dr is focused on GI and menopause, I'm not really concerned about those (unless of course they could be causing the swollen lymph nodes?). I know how to manage GI symptoms with diet for the most part. I can handle the hot flashes and sweats if it's just hormones.
I am only concerned about the lymph nodes increasing in size and potentially being part of the cause of the unrelenting pain down my leg or something more serious, such as cancer. If the clear thyroid CT and labs rule out the latter, then great. I'll cross that off the list.
Note that I've had allergies my entire life, though, and only ever noticed swollen lymph nodes when I had a bad throat or sinus infection. Not even when I contracted giardia travelling to Central America, nor when I was bitten by fire ants and my ankle swelled up, nor when I had sepsis did I ever have swollen lymph nodes at all that I can remember. Only lumps I had previously noticed were lipomas on my ankles
Just before I noticed the new lumps/nodes was 2018 which was an eventful year.
2018 I had a trial spinal implant installed.
3 days later developed sepsis and acute kidney injury.
A few months later I had the permanent spinal implant installed.
A few months later a hurricane brought floods to my area so had to move.
**In November 2018, my neuro had me try Ajovy (fremanezumab-vfrm). I had a reaction to this injection within a few days. Rash over most of my body/trunk and blisters on my face. I did not take the next dose nor did I agree to erenumab / Aimovig even though she recommended it.
I switched back to maxalt. Previously botox had well controlled the migraines but I can't afford it without insurance.
I noticed the lumps / nodes late 2019/early 2020.
I hope this helps. Sorry for the delay. I've had a brutal migraine for a few days and it is hard to sit and type anyway due to pain.
Currently 53. Weight now 123 (down 2 more lbs from 3 weeks ago).
Definitely have an overactive immune system. Drs have tested my ANA/CRP more times than I can count but never found anything indicating RA, SLE, etc. Many suspected autoimmune or with the extensive herniations a possible connective tissue disorder but labs never confirm it. Also have had several traumatic injuries.
Throughout middle school I had repeated strep infections and was put on several rounds of antibiotics. My tonsils were often inflamed to the point that they touched in the back of my throat.
At 12 I was hospitalized to rule out rheumatic fever. All tests were normal. Still, my tonsils were not removed, nor was I treated for allergies. Just antibiotics when I had a severe sore throat and fever. This continued into my 20s when I had my tonsils removed.
At 14 I had mono. The Dr had my mother take me to the hospital. I didn't have to stay overnight but they told her to keep me home from school for a week. I can remember being extremely tired.
By late 20s I developed hypertension. Family history of cardiovascular disease.
My right knee started slipping about 18 mos ago. Dr did an xray and said it is fine for my age. Suggested PT which I did. There is more strength in the knee so it slips less but now it is permanently swollen above the kneecap. If I stand more than a few minutes there is more swelling and pain. That knee was damaged in my 20s (torn medial tendon). Left knee was damaged at age 16 (torn meniscus) but arthroscopic lateral release fixed it and it doesn't seem to bother me often.
"Were you in that situation when the unexplained neutrophilia happened?"
No. 2013 I had a strange illness that was either food poisoning or some unknown virus. By the following year the neutrophilia started but GP at the time assumed it was related to a UTI. The UTI resolved but follow up labs still showed high neutrophils months later. Then, I moved into a shelter. After that I lived with friends and family and later was back in my home after divorce. Neutrophilia persisted so Dr referred me to hematologist. He considered my allergies because with all the upheaval in my life (divorce and moving) I had not kept up with allergy treatments. So he suggested restarting allergy shots and within a year the labs normalized. The only other "new" or out of the ordinary thing I recall within a few years of the neutrophilia was the H1N1 vaccine in 2011 or 2010. I can't recall which.
"Aha, there we go. Allergies were severe?"
Yes, severe allergies. 3 incidents of anaphylaxis. 2 in allergist's office after allergy shots (mold). Needed 2 shots of epi for one of these episodes.
One incident after prolonged exposure to mold while living in an older camper in 2016.
PT suggested piriformis. Tried positions and exercises to alleviate it but that has not helped.
The only position that seems to help is fetal position, lying on right side with 2 pillows between legs to keep knees apart. It doesn't alleviate the pain but it lessens the sharpness that seems to be seated in my left hip/buttock/leg.
As soon as I sit, stand in one place for more than a few minutes or do anything that moves my left leg, especially twisting or pushing outward (seated or lying down) or relaxing inward while lying down intensifies pain.
As for the nodes, I don't know about size with any certainty, but can estimate pea to marble sized. The ones in the back of my knee/thigh do not generally hurt unless I press on them. For both legs, when I press on the nodes my corresponding foot feels pressure and tingling.
Had a follow up visit at GP with the resident from last time and a new attending Dr. The attending Dr is distracted by my perimenopausal symptoms so, of course, wants to put me on SSRIs. I explained my past negative experience with these meds (SSRI and SNRI) while being treated for migraines and depression. He tried to tell me that since this was for something different and a low dose that I shouldn't expect the same negative side effects. I persisted so he said he would not RX Prozac but something that wasn't an SSRI/SNRI.
He noted that he wouldn't want to give me any sort of pain medication.
Of course not -- I told him I'm already on them. That wasn't the point of the visit. For some reason, they seem to get stuck on this --- almost every single Dr.
Anyway, the resident Dr said my thyroid CT was normal. And with normal labs and a normal CT the attending is not concerned about the lymph nodes.
Lo and behold, the attending Dr prescribed duloxetine (SNRI). So either he "forgot" or just lied.
Frustrating.
He also focused on my GI symptoms and suggested crohn's. I've been Dx with IBS for several years. Gall bladder removed several years ago. I know my diet has to be managed carefully. The only other thing I think may be causing those issues would be abdominal adhesions.
They were an issue after a C-section gone awry in 1989. The surgeon didn't mention what went wrong, he just sewed up where he made accidental incisions. I had 2 surgeries to reduce the adhesions. During one, the surgeon noted my bladder was stuck to my stomach wall and my uterus was stuck to my bladder. It was a mess and it felt like it. After the 2nd reduction the surgeon said the adhesions were just at my intestines but they didn't venture in to reduce those as I wasn't having any GI problems at the time and it was risky.
Although the current dr is focused on GI and menopause, I'm not really concerned about those (unless of course they could be causing the swollen lymph nodes?). I know how to manage GI symptoms with diet for the most part. I can handle the hot flashes and sweats if it's just hormones.
I am only concerned about the lymph nodes increasing in size and potentially being part of the cause of the unrelenting pain down my leg or something more serious, such as cancer. If the clear thyroid CT and labs rule out the latter, then great. I'll cross that off the list.
Note that I've had allergies my entire life, though, and only ever noticed swollen lymph nodes when I had a bad throat or sinus infection. Not even when I contracted giardia travelling to Central America, nor when I was bitten by fire ants and my ankle swelled up, nor when I had sepsis did I ever have swollen lymph nodes at all that I can remember. Only lumps I had previously noticed were lipomas on my ankles
Just before I noticed the new lumps/nodes was 2018 which was an eventful year.
2018 I had a trial spinal implant installed.
3 days later developed sepsis and acute kidney injury.
A few months later I had the permanent spinal implant installed.
A few months later a hurricane brought floods to my area so had to move.
**In November 2018, my neuro had me try Ajovy (fremanezumab-vfrm). I had a reaction to this injection within a few days. Rash over most of my body/trunk and blisters on my face. I did not take the next dose nor did I agree to erenumab / Aimovig even though she recommended it.
I switched back to maxalt. Previously botox had well controlled the migraines but I can't afford it without insurance.
I noticed the lumps / nodes late 2019/early 2020.
I hope this helps. Sorry for the delay. I've had a brutal migraine for a few days and it is hard to sit and type anyway due to pain.
COMMUNITY LEADER
Let's delve into how nodes can be painful.
As a reactive node expands (because of immune cell proliferation to fight a real or imagined invader), it presses out into the enclosing capsule (membrane). Sort of like being a sore pimple. The tenderness/pain also involves inflammatory chemicals like Substance P and Bradykinin.
OTOH, a cancer in a node tends to grow right through the capsule. So there is not the same pressing. But a cancerous node can atypically have pain if there is internal bleeding into a "necrotic center". The blood buildup presses out. Necrosis = dead cells.
Severe pain, though, is not usual. An ultrasound might show why. The US can show more than a CT or an MRI, it is superior even though cheaper. If a US shows probable cancer, then a needle biopsy can be done to confirm. But I don't think you should want a US now - unless it was free.
One key to your mystery is why your node pain is severe.
Btw, can you or any doc tell if they are more oval or rounded? What is the largest size? L x W
As a reactive node expands (because of immune cell proliferation to fight a real or imagined invader), it presses out into the enclosing capsule (membrane). Sort of like being a sore pimple. The tenderness/pain also involves inflammatory chemicals like Substance P and Bradykinin.
OTOH, a cancer in a node tends to grow right through the capsule. So there is not the same pressing. But a cancerous node can atypically have pain if there is internal bleeding into a "necrotic center". The blood buildup presses out. Necrosis = dead cells.
Severe pain, though, is not usual. An ultrasound might show why. The US can show more than a CT or an MRI, it is superior even though cheaper. If a US shows probable cancer, then a needle biopsy can be done to confirm. But I don't think you should want a US now - unless it was free.
One key to your mystery is why your node pain is severe.
Btw, can you or any doc tell if they are more oval or rounded? What is the largest size? L x W
COMMUNITY LEADER
"Sometimes I wake up sweating."
As you know, lymphoma is a cancer of immune cells. The cells are deranged. But while night sweats are a symptom of lymphoma, more normal immune reactions can also produce night sweats because they produce the same signalling biochemicals.
As you know, lymphoma is a cancer of immune cells. The cells are deranged. But while night sweats are a symptom of lymphoma, more normal immune reactions can also produce night sweats because they produce the same signalling biochemicals.
COMMUNITY LEADER
"the pain seemed to migrate lower from the low back to the buttock."
Are you aware of pyriformis syndrome? If that's a possibility for you, you can take measures to avoid aggravating it.
Are you aware of pyriformis syndrome? If that's a possibility for you, you can take measures to avoid aggravating it.
COMMUNITY LEADER
If anybody comes along in the future with a similar situation, I'd suggest the following.
Many of the symptoms might be resulting from very excessive stress, both physical and psychological. Heavy stress can affect the thyroid. It can affect blood pressure, not only from andrenaline and similar, but also from the aldosterone which is secreted by the adrenal glands.
The slight liver problem might be from chronic or reactivated Epstein Barr virus, or from tick borne Babesia, which is a common co-infection of Lyme but can also occur independently.
I'd asked about geo location because the lack of action by the first doc seemed as if this might be in someplace like Costa Rica. But in retrospect, this is a very complex case and so I can't blame the doc for his "above pay grade" comment.
There is an approach called Functional Medicine which seeks to discover *why* the problems are occurring, rather than merely identifying and treating the symptoms separately.
There's also an unusual approach called evolutionary Medicine which would argue that most of these symptoms can be treated with plants, since that's what we evolved with. Maybe true, maybe not.
Many of the symptoms might be resulting from very excessive stress, both physical and psychological. Heavy stress can affect the thyroid. It can affect blood pressure, not only from andrenaline and similar, but also from the aldosterone which is secreted by the adrenal glands.
The slight liver problem might be from chronic or reactivated Epstein Barr virus, or from tick borne Babesia, which is a common co-infection of Lyme but can also occur independently.
I'd asked about geo location because the lack of action by the first doc seemed as if this might be in someplace like Costa Rica. But in retrospect, this is a very complex case and so I can't blame the doc for his "above pay grade" comment.
There is an approach called Functional Medicine which seeks to discover *why* the problems are occurring, rather than merely identifying and treating the symptoms separately.
There's also an unusual approach called evolutionary Medicine which would argue that most of these symptoms can be treated with plants, since that's what we evolved with. Maybe true, maybe not.
COMMUNITY LEADER
I realize that many of the things I might say to you, you already know. But there is one glaring omission in your narrative: you never mentioned 'mast cells'. It's especially glaring because you have anaphylaxis. I could write volumes, but stop me if you already know a lot about them.
I'd regard every doc as a potential threat to you. Because they might unthinkingly prescribe something harmful.
I'd be wary of any prescribed MABs. monoclonal antibodies.
Yes, some docs will unthinkingly regard you as possibly drug seeking. ["For some reason, they seem to get stuck on this --- almost every single Dr."]
I have no doubt that very many suspect you of needing a psychiatrist. That is what so many **wrongly** do when they can't figure out a patient's problems. It is very common in mystery cases. Very common.
There is more than one person I've talked to on this forum over the course of years. So don't think it's any kind of burden.
Yes, everything does come down to your immune system. So I'd say that the goal is to be as anti-inflammatory as possible. We can talk about the ways to try to do that. Self help.
Btw, if the neutrophilia ever returns, I'd most definitely try frankincense (boswellia serrata). It's a 5-LOX inhibitor, which means it inhibits Leukotriene B4, and is probably the only OTC one that exists. LTB4 makes neuts go crazy.
I'd regard every doc as a potential threat to you. Because they might unthinkingly prescribe something harmful.
I'd be wary of any prescribed MABs. monoclonal antibodies.
Yes, some docs will unthinkingly regard you as possibly drug seeking. ["For some reason, they seem to get stuck on this --- almost every single Dr."]
I have no doubt that very many suspect you of needing a psychiatrist. That is what so many **wrongly** do when they can't figure out a patient's problems. It is very common in mystery cases. Very common.
There is more than one person I've talked to on this forum over the course of years. So don't think it's any kind of burden.
Yes, everything does come down to your immune system. So I'd say that the goal is to be as anti-inflammatory as possible. We can talk about the ways to try to do that. Self help.
Btw, if the neutrophilia ever returns, I'd most definitely try frankincense (boswellia serrata). It's a 5-LOX inhibitor, which means it inhibits Leukotriene B4, and is probably the only OTC one that exists. LTB4 makes neuts go crazy.
1 Comments
I've been in Costa Rica twice to do mission work in the jungle. Got terribly ill with giardiasis in 2008. I went back in 2009 and got several fire ant stings. Other than that, no dengue or other hitchhikers that I'm aware of. GP at the time Rx'd plaquenil, for potential malaria even though that isn't common.
COMMUNITY LEADER
Do you ever get unexplained skin flushing?
1 Comments
Yes, often. Like a strawberry. It usually is noticeable on my chest as light scattered redness. Then it becomes more intense and spreads upward to my neck, face, ears. Sometimes stress or just a long conversation does it. Sometimes this is how an allergic reaction begins, such as eating chicken that was breaded in the same vat as fish, which I'm allergic to.
COMMUNITY LEADER
Yes, it's crucial to avoid any position or activity that makes the leg pain worse. Trying to tough your way through it is the worst thing possible, as that only increases the inflammation.
And yes, all your docs are looking for horses but you are the quintessential zebra. Even more so than Ehlers Danlos is. Btw, mast cells might cause EDS and other CTDs.
A hyperactive immune system might be protective against cancer. If the 'killer' cells are hyped up.
I hope you soon get a big lump sum from SSI. Then you can go past mere CRP and test for IL-1. CRP is for acute inflammation. IL-1 and others can be high in *chronic* inflammation. There are worlds within worlds, beyond what you have been tested for.
Auto-inflammatory (zebra) is different than auto-immune (horse).
And yes, all your docs are looking for horses but you are the quintessential zebra. Even more so than Ehlers Danlos is. Btw, mast cells might cause EDS and other CTDs.
A hyperactive immune system might be protective against cancer. If the 'killer' cells are hyped up.
I hope you soon get a big lump sum from SSI. Then you can go past mere CRP and test for IL-1. CRP is for acute inflammation. IL-1 and others can be high in *chronic* inflammation. There are worlds within worlds, beyond what you have been tested for.
Auto-inflammatory (zebra) is different than auto-immune (horse).
COMMUNITY LEADER
Weight loss from advanced cancer (cachexia) is when the body is deconstructing itself. That is very different than when a person isn't getting sufficient calories, usually from GI distress -- or they might not be absorbing the calories efficiently.
COMMUNITY LEADER
Leg nodes: are you walking around outdoors without shoes?
1 Comments
No. But living in the country near swamps. Often get sand/dirt on my feet. No sidewalk or driveway. Just gravel and native soil which is dirt/sand.
COMMUNITY LEADER
Menopause? That doc might be right, though they probably have no idea "why" they are right :)
Women are 3-4 times more likely to have immune problems than men. Yet it's not unusual to have long standing immune dysfunction get better during pregnancy.
https://www.ncbi.nlm.nih.gov/pmc/articles/PMC6501433/
"Autoimmune Disease in Women: Endocrine Transition and Risk Across the Lifespan" 2019
But note that they don't mention mast cell disorders (auto inflammatory) there, because of the fixation with autoimmune conditions.
----------------------------------
So let's go off the beaten path of PubMed and look elsewhere for info about MCs. A lot of naturopaths are flaky, but this one doesn't seem to be:
https://mastcell360.com/estrogen-dominance/
"...did you start to notice an increase in symptoms once you started going through menopause?
That increase in mast cell activity could be the result of estrogen dominance."
She has Mast Cell Activation Syndrome (MCAS) herself. Sources like her MIGHT have valuable thoughts that can help you. In the end, though, you have to be your own Sherlock Holmes.
Btw, are you aware of low histamine diets? Your adhesions might have been spurred by general abdominal/intestinal inflammation. MCs make histamine.
From her 'About' page: "After decades of seeing traditional health care practitioners, I felt like I was at the end of my rope. The medications often made me worse. Being given the wrong supplements didn’t help either. " Sound familiar? That is very very common with people who have immune dysfunction. You'll find that all over.
However, I don't see that you need expensive genetic testing at all. Do you need stress reduction? Of course, but that's harder for you than most to achieve because of circumstances. But then, you seem tougher and more resilient than most.
Women are 3-4 times more likely to have immune problems than men. Yet it's not unusual to have long standing immune dysfunction get better during pregnancy.
https://www.ncbi.nlm.nih.gov/pmc/articles/PMC6501433/
"Autoimmune Disease in Women: Endocrine Transition and Risk Across the Lifespan" 2019
But note that they don't mention mast cell disorders (auto inflammatory) there, because of the fixation with autoimmune conditions.
----------------------------------
So let's go off the beaten path of PubMed and look elsewhere for info about MCs. A lot of naturopaths are flaky, but this one doesn't seem to be:
https://mastcell360.com/estrogen-dominance/
"...did you start to notice an increase in symptoms once you started going through menopause?
That increase in mast cell activity could be the result of estrogen dominance."
She has Mast Cell Activation Syndrome (MCAS) herself. Sources like her MIGHT have valuable thoughts that can help you. In the end, though, you have to be your own Sherlock Holmes.
Btw, are you aware of low histamine diets? Your adhesions might have been spurred by general abdominal/intestinal inflammation. MCs make histamine.
From her 'About' page: "After decades of seeing traditional health care practitioners, I felt like I was at the end of my rope. The medications often made me worse. Being given the wrong supplements didn’t help either. " Sound familiar? That is very very common with people who have immune dysfunction. You'll find that all over.
However, I don't see that you need expensive genetic testing at all. Do you need stress reduction? Of course, but that's harder for you than most to achieve because of circumstances. But then, you seem tougher and more resilient than most.
1 Comments
"Continuing down the road of inflammation allergic reactions, "
While pregnant in the 1980s I was prescribed compazine for severe morning sickness. After a couple days I had a dystonic reaction that required a trip to the ER and IV benadryl. Quite an ordeal. The morning sickness was all day, every day for months. I was hospitalized for dehydration several times until month 5. I'd never had any movement type of issues before the compazine incident but since then developed RLS.
DIET / Inflammation diet
In 2018 I started from zero when recovering from sepsis so I went from strictly clear fluids and IV at the hospital to adding one thing at a time. If I run into trouble or go too fast I switch to elimination diet to see what seemed to be the trigger. I have a core group of items that I stick to that seem to agree with me. I haven't been able to find a reliable source for inflammatory foods though. Most websites are trying to sell something or give conflicting information.
Sometimes, due to circumstances, I don't have much of a choice in what I eat. I rely on charity for groceries so there if I have flour tortillas and english muffins, I just don't eat too much at one time. Basically I avoid dairy and tomatoes and cut out all high fructose corn syrup, caffeine, food in boxes unless there is no alternative, etc.
ALT Practitioners
I looked into naturopaths and functional medicine but the prices are currently beyond my budget. I understand what you mean about the dr, (let's call him attending dr nbr 2) but it is frustrating how they get distracted by squirrels (menopause) or just want to throw pills at me. I have been worked up by neurologists, psychiatrists and psychologists and given every SSRI, SNRI there is as well as other mood regulators for migraines and later for the back pain with usually terrible results. As for psych Dx, it has consistently been anxiety and depression tied to the unrelenting pain and my life being turned upside down.
RX
I took the cymbalta even though I didn't want to. I tried to keep a positive outlook hoping that it might not have negative effects but after a few days, RLS reared its ugly head. I was not been able to stay awake for more than a couple hours at a time and when I was awake I had to constantly kick my legs. It has been absolutely miserable. More than usual. None of the other symptoms changed.
Attending dr nbr 1 (the one who isn't distracted by squirrels) agreed to discontinue cymbalta. After stopping cymbalta the RLS calmed down and I can stay awake - actually I am back to not being able to sleep much. The night sweats are still a thing.
The nodes are still swollen (neck, arms, groin, legs, both sides and possibly one center of abdomen above navel) and I have pain and soft swelling in my calves and thighs. It's a burning, tearing pain mostly at night but sometimes during the day. It is scary.
There is still chest pain radiating from the center from time to time. If I forgot to mention, ECG was normal (although one line was out of whack the resident said it was probably because of how the leads were connected). She thought the chest pain might be pericarditis from sep 2021 covid infection. However, this chest pain seems to be a similar caliber and character as the pain in my legs and groin.
The groin pain started a few months ago. It radiates in 2 or 3 lines in the exact same pattern each time from my mid inner thigh up to my saddle region/pubic bone area just line the chest pain radiates in the same pattern from the center outward.
What it feels like to me - for what it's worth - is that my lymph nodes or whatever is growing are increasing in size, perhaps with waxing/waning inflammation which from time to time applies pressure more or less on nerves causing radiating pain.
Whether related or unrelated, there are pockets, like bursitis that seem to be getting larger and increasing in number in my legs as well. Maybe since my lymph nodes are still at the same size or larger, for whatever reason things are not draining properly so fluid does not know where to go and just piles into various pockets.
I once gained a lot of weight in a short period of time from one prescription or another and I could feel my skin tearing as stretch marks were forming. The pain in my calves and thighs that occurs at night (burning, tearing) feels of similar character to that but without the stretch marks and without the weight gain.
The various lumps that seem to be adding to my legs seem like softer and larger lumps than the those along the path of the lymph nodes. They seem almost like they are filled with fluid or gel, not characteristic of adipose tissue anyhow. Attending dr nbr 1 and resident dr examined these and their opinions are these are not lipomas.
Also I'm down another pound despite making an effort to eat more.
So I went back to see Attending nbr 1 and resident dr and they are sending me for a biopsy tomorrow of one of the nodes in my leg. I do not know if it will be a needle biopsy or if they are taking one of them out or what.
You asked about shape/ size of the nodes.... so far most are pea to marble sized. The ones which are causing me grief are 2 behind my left knee that are marble sized, round to semi oval, semi firm. One is close to the surface and one is rather deep and very painful as it is close to my sciatic nerve. When I touch either one, the bottom of my left foot feels pressure and heat as well as additional buzzing/ tingling. My left foot always tingles and has a buzzing/tight feeling.
Sorry for the delay. I hope any of these ramblings are interesting/ useful.
While pregnant in the 1980s I was prescribed compazine for severe morning sickness. After a couple days I had a dystonic reaction that required a trip to the ER and IV benadryl. Quite an ordeal. The morning sickness was all day, every day for months. I was hospitalized for dehydration several times until month 5. I'd never had any movement type of issues before the compazine incident but since then developed RLS.
DIET / Inflammation diet
In 2018 I started from zero when recovering from sepsis so I went from strictly clear fluids and IV at the hospital to adding one thing at a time. If I run into trouble or go too fast I switch to elimination diet to see what seemed to be the trigger. I have a core group of items that I stick to that seem to agree with me. I haven't been able to find a reliable source for inflammatory foods though. Most websites are trying to sell something or give conflicting information.
Sometimes, due to circumstances, I don't have much of a choice in what I eat. I rely on charity for groceries so there if I have flour tortillas and english muffins, I just don't eat too much at one time. Basically I avoid dairy and tomatoes and cut out all high fructose corn syrup, caffeine, food in boxes unless there is no alternative, etc.
ALT Practitioners
I looked into naturopaths and functional medicine but the prices are currently beyond my budget. I understand what you mean about the dr, (let's call him attending dr nbr 2) but it is frustrating how they get distracted by squirrels (menopause) or just want to throw pills at me. I have been worked up by neurologists, psychiatrists and psychologists and given every SSRI, SNRI there is as well as other mood regulators for migraines and later for the back pain with usually terrible results. As for psych Dx, it has consistently been anxiety and depression tied to the unrelenting pain and my life being turned upside down.
RX
I took the cymbalta even though I didn't want to. I tried to keep a positive outlook hoping that it might not have negative effects but after a few days, RLS reared its ugly head. I was not been able to stay awake for more than a couple hours at a time and when I was awake I had to constantly kick my legs. It has been absolutely miserable. More than usual. None of the other symptoms changed.
Attending dr nbr 1 (the one who isn't distracted by squirrels) agreed to discontinue cymbalta. After stopping cymbalta the RLS calmed down and I can stay awake - actually I am back to not being able to sleep much. The night sweats are still a thing.
The nodes are still swollen (neck, arms, groin, legs, both sides and possibly one center of abdomen above navel) and I have pain and soft swelling in my calves and thighs. It's a burning, tearing pain mostly at night but sometimes during the day. It is scary.
There is still chest pain radiating from the center from time to time. If I forgot to mention, ECG was normal (although one line was out of whack the resident said it was probably because of how the leads were connected). She thought the chest pain might be pericarditis from sep 2021 covid infection. However, this chest pain seems to be a similar caliber and character as the pain in my legs and groin.
The groin pain started a few months ago. It radiates in 2 or 3 lines in the exact same pattern each time from my mid inner thigh up to my saddle region/pubic bone area just line the chest pain radiates in the same pattern from the center outward.
What it feels like to me - for what it's worth - is that my lymph nodes or whatever is growing are increasing in size, perhaps with waxing/waning inflammation which from time to time applies pressure more or less on nerves causing radiating pain.
Whether related or unrelated, there are pockets, like bursitis that seem to be getting larger and increasing in number in my legs as well. Maybe since my lymph nodes are still at the same size or larger, for whatever reason things are not draining properly so fluid does not know where to go and just piles into various pockets.
I once gained a lot of weight in a short period of time from one prescription or another and I could feel my skin tearing as stretch marks were forming. The pain in my calves and thighs that occurs at night (burning, tearing) feels of similar character to that but without the stretch marks and without the weight gain.
The various lumps that seem to be adding to my legs seem like softer and larger lumps than the those along the path of the lymph nodes. They seem almost like they are filled with fluid or gel, not characteristic of adipose tissue anyhow. Attending dr nbr 1 and resident dr examined these and their opinions are these are not lipomas.
Also I'm down another pound despite making an effort to eat more.
So I went back to see Attending nbr 1 and resident dr and they are sending me for a biopsy tomorrow of one of the nodes in my leg. I do not know if it will be a needle biopsy or if they are taking one of them out or what.
You asked about shape/ size of the nodes.... so far most are pea to marble sized. The ones which are causing me grief are 2 behind my left knee that are marble sized, round to semi oval, semi firm. One is close to the surface and one is rather deep and very painful as it is close to my sciatic nerve. When I touch either one, the bottom of my left foot feels pressure and heat as well as additional buzzing/ tingling. My left foot always tingles and has a buzzing/tight feeling.
Sorry for the delay. I hope any of these ramblings are interesting/ useful.
COMMUNITY LEADER
The next step is to know what to do about all this. For that to be pursued, you have to be convinced that we're on the right track. Hopefully, you're thinking, "how the heck did he know to ask about skin flushing?" :)
You have a Mast Cell Disorder. There are two types of that. Mastocytosis and Mast Cell Activation Syndrome (MCAS, which is much more common). We can zero in on which.
For now, have you tried histamine blockers? There are two types of OTC meds: H1 blockers are like Benadryl/diphenhydramine. H2 blockers are thought of as antacids, like famotidine and ranitidine. Do you have experience with those? (Those are not the same as Pepcid, which is a wholly different type of med.)
A second class of useful, plant derived OTC meds are Mast Cell Stabilizers. Quercetin is probably the most known. They stop the MCs from going off too easily and too powerfully.
Lots of progress can be made. Let me know what you think so far.
You have a Mast Cell Disorder. There are two types of that. Mastocytosis and Mast Cell Activation Syndrome (MCAS, which is much more common). We can zero in on which.
For now, have you tried histamine blockers? There are two types of OTC meds: H1 blockers are like Benadryl/diphenhydramine. H2 blockers are thought of as antacids, like famotidine and ranitidine. Do you have experience with those? (Those are not the same as Pepcid, which is a wholly different type of med.)
A second class of useful, plant derived OTC meds are Mast Cell Stabilizers. Quercetin is probably the most known. They stop the MCs from going off too easily and too powerfully.
Lots of progress can be made. Let me know what you think so far.
1 Comments
Funny you should mention this.... I buy diphenhydramine in bottles of 100 or more capsules and alternate with hydroxyzine merely because the latter is available from time to time free through a private prescription charity.
Typically I use it for itching, rash, (post-allergy shot reaction, insect bite reactions which can be quite severe, or when I eat something unexpectedly reactive). For example, I ate chicken at a restaurant and my friend asked if I was feeling alright and in fact I felt flushed. My chest and neck were splotchy red. So, I asked the manager if they prepared the chicken where they also prepared fish, and they did. I am allergic to fish-with-fins. I had to take 2, 25mg benadryl to stop the reaction.
When younger, I took both famotidine and ranitidine but experienced too much oral dryness and tooth decay and loss. Perhaps not causal, but since discontinuing it seemed to slow the tooth decay. I hadn't heard of Quercetin until recently and just acquired some. I will give that a try. Luckily, Quercetin is in some of the foods growing just outside my door like onions and berries and I have been taking full advantage of that as often as possible.
Typically I use it for itching, rash, (post-allergy shot reaction, insect bite reactions which can be quite severe, or when I eat something unexpectedly reactive). For example, I ate chicken at a restaurant and my friend asked if I was feeling alright and in fact I felt flushed. My chest and neck were splotchy red. So, I asked the manager if they prepared the chicken where they also prepared fish, and they did. I am allergic to fish-with-fins. I had to take 2, 25mg benadryl to stop the reaction.
When younger, I took both famotidine and ranitidine but experienced too much oral dryness and tooth decay and loss. Perhaps not causal, but since discontinuing it seemed to slow the tooth decay. I hadn't heard of Quercetin until recently and just acquired some. I will give that a try. Luckily, Quercetin is in some of the foods growing just outside my door like onions and berries and I have been taking full advantage of that as often as possible.
COMMUNITY LEADER
Can you use your fingernail to write on your sternum? Can you see lines? That's called dermographia. It happens because the mechanical pressure causes MCs to release histamine right there.
1 Comments
This has happened but only occasionally. Under the right circumstances I can just brush against something and a line appears
COMMUNITY LEADER
"Often get [swamp] sand/dirt on my feet."
That probably explains the nodes in the legs, which had been a mystery.
That probably explains the nodes in the legs, which had been a mystery.
COMMUNITY LEADER
"Sometimes stress or just a long conversation does [the skin flushing]."
You have a pretty pronounced case. I'd guess that you are also high intensity, emotionally.
Niacin should also make you flush a LOT. Because it causes MC release. Since you get anaphylaxis, I'd avoid niacin.
I think the first goal is to stop the weight loss: by avoiding high-histamine foods, and by using OTC H1 and H2 blockers, and probably also using an MC Stabilizer.
Btw, "Brain fog" is usual in MCAS. It can come and go. Don't think that it's anything like brain degeneration, it's brain inflammation.
Also btw, there are sleep aids like Sominex - which are just diphenhydramine/Benadryl. Histamine operates in the brain, and is a wakefulness biochemical.
Another btw, diphenhydramine/Benadryl led to the development of Prozac.
Do you agree that it all starts to fit together?
You have a pretty pronounced case. I'd guess that you are also high intensity, emotionally.
Niacin should also make you flush a LOT. Because it causes MC release. Since you get anaphylaxis, I'd avoid niacin.
I think the first goal is to stop the weight loss: by avoiding high-histamine foods, and by using OTC H1 and H2 blockers, and probably also using an MC Stabilizer.
Btw, "Brain fog" is usual in MCAS. It can come and go. Don't think that it's anything like brain degeneration, it's brain inflammation.
Also btw, there are sleep aids like Sominex - which are just diphenhydramine/Benadryl. Histamine operates in the brain, and is a wakefulness biochemical.
Another btw, diphenhydramine/Benadryl led to the development of Prozac.
Do you agree that it all starts to fit together?
COMMUNITY LEADER
And yes, there is such a thing as--> acquired post inflammatory hyperpigmentation.
1 Comments
Now this triggers a memory. After an awful case of scabies in 2017 I developed brown spots wherever the itching and lesions occurred. I have them all over my face, front, arms, abdomen and back. Never had that happen before. The dermatologist brushed it off but I thought it was unusual. The spots never went away.
The dermatologist was very dismissive. She was convinced her course of treatment would work and when it didn't she was angry because she was a doctor for 28 years and it ALWAYS worked!
She also informed me that scabies never occurs on the scalp. Well, I got it on my scalp. Of course, scabies does not USUALLY occur on the scalp of an adult but I have particularly sensitive, dry skin, probably enough akin to that of a child. Children can get scabies on the scalp easily so it seemed possible to me.
("Usually" is an important qualifier that some people miss)
To her, it just didn't seem possible so she decided it was dermatitis and not scabies even though a week later I brought my roommate in to whom I had passed scabies. She was not pleased.
The other issue is that she prescribed permethrin but it did not work. She then prescribed a small amount of ivermectin. I tried to explain that we did not have a typical home with washing machine and dryer. We needed to throw everything at this at once. We were living rough in a camper and I had just had major back surgery. She was not getting it through her head and yelled at me that she had been a doctor for 28 years, and that she always prescribed the same thing each time and that it always works. ALWAYS
...
I was tempted to ask if she had ever heard of resistance, or evolution, but I didn't.
I convinced her to just humor me and prescribe both permethrin and ivermectin at once and that did it.
The two lessons for anyone encountering this are:
1- words mean things. If a disease doesn't usually occur in a population, then that means it CAN occur in that population with certain conditions.
2- not everyone lives the same way. Even the word "exercise" can mean 29 different things depending on who does it.
The dermatologist was very dismissive. She was convinced her course of treatment would work and when it didn't she was angry because she was a doctor for 28 years and it ALWAYS worked!
She also informed me that scabies never occurs on the scalp. Well, I got it on my scalp. Of course, scabies does not USUALLY occur on the scalp of an adult but I have particularly sensitive, dry skin, probably enough akin to that of a child. Children can get scabies on the scalp easily so it seemed possible to me.
("Usually" is an important qualifier that some people miss)
To her, it just didn't seem possible so she decided it was dermatitis and not scabies even though a week later I brought my roommate in to whom I had passed scabies. She was not pleased.
The other issue is that she prescribed permethrin but it did not work. She then prescribed a small amount of ivermectin. I tried to explain that we did not have a typical home with washing machine and dryer. We needed to throw everything at this at once. We were living rough in a camper and I had just had major back surgery. She was not getting it through her head and yelled at me that she had been a doctor for 28 years, and that she always prescribed the same thing each time and that it always works. ALWAYS
...
I was tempted to ask if she had ever heard of resistance, or evolution, but I didn't.
I convinced her to just humor me and prescribe both permethrin and ivermectin at once and that did it.
The two lessons for anyone encountering this are:
1- words mean things. If a disease doesn't usually occur in a population, then that means it CAN occur in that population with certain conditions.
2- not everyone lives the same way. Even the word "exercise" can mean 29 different things depending on who does it.
COMMUNITY LEADER
Well, I don't know what else I can do but offer a summary.
You have a highly overactive immune system. It reacts wrongly to too many things, and reacts too strongly. On this forum, the vast majority of people who came with a fear of lymphoma actually have overactive immune systems. (With you it centers on mast cells, the same cells that produce anaphylaxis.) If they would have had a cancer, it would have been found before coming here.
I'd ask every doc of yours if they know about MCAS (Mast Cell Activation Syndrome). If/when they say "no" then that pretty much explains things.
The biopsy is looking for what, cancer? They're going on expensive fishing expeditions because they have no idea what else to do. Imagine if an auto mechanic says, "I'll just start switching out parts and hope that things get better somehow." There is little attempt to understand *why* things are not working right. I could point you to video talks by MDs who say the same things that I'm saying, they are of course rare.
So the pathology report will say "no cancer cells detected". Nothing whatsoever is gained.
The internet is filled with patients who say that they'd spent years going from specialist to specialist, sometimes across the world. 90% of them end up knowing they have immune dysfunction.
But yes, there are also people who haunt the internet saying, "I pushed and pushed my docs and they finally found my cancer. So everybody else should do that, too." That's like someone who was struck by lightning going around saying that it happens to everybody.
You don't really need to visit expensive functional medicine docs, or naturopaths. All the info is there online for free. Besides, most functional medicine docs and/or naturopaths are just plodders anyway.
You have a highly overactive immune system. It reacts wrongly to too many things, and reacts too strongly. On this forum, the vast majority of people who came with a fear of lymphoma actually have overactive immune systems. (With you it centers on mast cells, the same cells that produce anaphylaxis.) If they would have had a cancer, it would have been found before coming here.
I'd ask every doc of yours if they know about MCAS (Mast Cell Activation Syndrome). If/when they say "no" then that pretty much explains things.
The biopsy is looking for what, cancer? They're going on expensive fishing expeditions because they have no idea what else to do. Imagine if an auto mechanic says, "I'll just start switching out parts and hope that things get better somehow." There is little attempt to understand *why* things are not working right. I could point you to video talks by MDs who say the same things that I'm saying, they are of course rare.
So the pathology report will say "no cancer cells detected". Nothing whatsoever is gained.
The internet is filled with patients who say that they'd spent years going from specialist to specialist, sometimes across the world. 90% of them end up knowing they have immune dysfunction.
But yes, there are also people who haunt the internet saying, "I pushed and pushed my docs and they finally found my cancer. So everybody else should do that, too." That's like someone who was struck by lightning going around saying that it happens to everybody.
You don't really need to visit expensive functional medicine docs, or naturopaths. All the info is there online for free. Besides, most functional medicine docs and/or naturopaths are just plodders anyway.
1 Comments
Doctors are generally good at handling things that they already know how to do. They do pattern matching, form a Dx, then apply the 'standard of care' Tx. They do not figure out new things.
COMMUNITY LEADER
"What do corticosteroids do with mast cell disorders?"
Mainly: antagonizing IL-1 which is sort of the granddaddy of pro-inflammatory molecules. (Everything is "sort of", "maybe"--- and especially "usually" which you already realize as with the adult scabies. There are no absolutes, except for sometimes.)
But pred/dex et al. have too many long term sides which are bad, so there's a hierarchy and the lessers are DMARDS like methotrexate, and lesser yet the NSAIDS (COX inhibitors). The more powerfuls are usually the biologics like anti-TNF Humira.
But you should probably be mainly interested in plants, like the red-purple polyphenol anthocyanins (tart cherry, prunes, pomegranate, etc), and the phytosterols. Also MC stabilizers like mint and maybe ginger. Quercetin was demonstrated by Theoharides (the granddaddy of MC research) to be more effective than Rx meds. Then there's frankincense (the only OTC LOX & leukotriene-LTB4-neutrophil inhibitor - but, there's also the more expensive myrrh). Which have I overlooked? IMO, turmeric is overrated.
Bad gut bacteria make pro-inflammatories, so you can try to kill, starve or out-compete (with probiotics) them. Naturally enough, plants make anti-microbials, because they live outdoors in the dirt. But I'd be wary of the usual typical trendiness-of-the-month, whatever is being hawked by health-food-store types. There is so much useless hype.
What's often spoken of in inflammation is linear cascades, but I'd think of it more like the Mississippi Delta, all intertwining.
So you have many possibilities, fc. One might be magical for you as an individual.
Mainly: antagonizing IL-1 which is sort of the granddaddy of pro-inflammatory molecules. (Everything is "sort of", "maybe"--- and especially "usually" which you already realize as with the adult scabies. There are no absolutes, except for sometimes.)
But pred/dex et al. have too many long term sides which are bad, so there's a hierarchy and the lessers are DMARDS like methotrexate, and lesser yet the NSAIDS (COX inhibitors). The more powerfuls are usually the biologics like anti-TNF Humira.
But you should probably be mainly interested in plants, like the red-purple polyphenol anthocyanins (tart cherry, prunes, pomegranate, etc), and the phytosterols. Also MC stabilizers like mint and maybe ginger. Quercetin was demonstrated by Theoharides (the granddaddy of MC research) to be more effective than Rx meds. Then there's frankincense (the only OTC LOX & leukotriene-LTB4-neutrophil inhibitor - but, there's also the more expensive myrrh). Which have I overlooked? IMO, turmeric is overrated.
Bad gut bacteria make pro-inflammatories, so you can try to kill, starve or out-compete (with probiotics) them. Naturally enough, plants make anti-microbials, because they live outdoors in the dirt. But I'd be wary of the usual typical trendiness-of-the-month, whatever is being hawked by health-food-store types. There is so much useless hype.
What's often spoken of in inflammation is linear cascades, but I'd think of it more like the Mississippi Delta, all intertwining.
So you have many possibilities, fc. One might be magical for you as an individual.
COMMUNITY LEADER
"...swollen area (not sure if it is a lymph node) in my abdomen and I've experienced some constipation.
Just 2 months ago I had terrible abdominal cramps, pain, some bleeding."
So what is healthy food? How about home made sauerkraut? Since you very possibly have sensitivity to ingested histamine, sauerkraut would be bad. But you never know unless you try.
People who are sensitive to histamine (let's call it HST) can use DAO, the enzyme which breaks down HST.
Evaluate whether amines are triggering your migraines.
Btw, I see nothing wrong with high fructose, except for over eaters. You need easy calories.
Just 2 months ago I had terrible abdominal cramps, pain, some bleeding."
So what is healthy food? How about home made sauerkraut? Since you very possibly have sensitivity to ingested histamine, sauerkraut would be bad. But you never know unless you try.
People who are sensitive to histamine (let's call it HST) can use DAO, the enzyme which breaks down HST.
Evaluate whether amines are triggering your migraines.
Btw, I see nothing wrong with high fructose, except for over eaters. You need easy calories.
1 Comments
My first batch of homemade sauerkraut was tasty but that's what I ate not long before I wound up with abdominal cramps and terrible pain. I could not eat solid food for a week. It wasn't "off" bc others ate it without any issues. The reaction was eerily similar to a bout of sepsis in 2018 that landed me in the hospital for several days with colitis and AKI. Seems to be a pattern.
My GI doctor put me on a brown rice colitis diet. I had to slowly add one food at a time until I was back to a somewhat normal diet. Good to know about HFCS.... I happened to imbibe in A&W already this week because of the road trip for the almost biopsy.
I definitely need easy calories in more ways than one. I wound up with 2nd degree burns last year trying to boil water and a couple days later cut my finger and couldn't drive to get stitches right away. I used a butterfly closure and when I eventually got a ride to the clinic, doc said my patch job was sufficient. After caloric needs are met the histamine question is even more complicated. I absolutely love avocados but they are high in histamine. I never heard of DAO but will definitely look into that.
Migraines tend to be triggered by light (I'm extremely light sensitive), lack of sleep, hormones and stress, constipation and oddly enough, not emptying my bladder when I should. If I wait too long, that's it.
My GI doctor put me on a brown rice colitis diet. I had to slowly add one food at a time until I was back to a somewhat normal diet. Good to know about HFCS.... I happened to imbibe in A&W already this week because of the road trip for the almost biopsy.
I definitely need easy calories in more ways than one. I wound up with 2nd degree burns last year trying to boil water and a couple days later cut my finger and couldn't drive to get stitches right away. I used a butterfly closure and when I eventually got a ride to the clinic, doc said my patch job was sufficient. After caloric needs are met the histamine question is even more complicated. I absolutely love avocados but they are high in histamine. I never heard of DAO but will definitely look into that.
Migraines tend to be triggered by light (I'm extremely light sensitive), lack of sleep, hormones and stress, constipation and oddly enough, not emptying my bladder when I should. If I wait too long, that's it.
COMMUNITY LEADER
Oh, and compare yourself to pictures of urticaria pigmentosa. Make sure to tell me if you match or not, that relates to having MCAS vs the more severe mastocytosis.
1 Comments
There are several areas of pigmentation on my trunk, face and arms. A few spots are slightly raised, but they do not seem to be similar to the examples of known urticaria pigmentosa.
Around 2015, I noticed a spot on my face I thought was a large freckle. The next year a spot developed on the back of my hand. Then came scabies and dozens of dark spots (some round, some narrow lines like a pencil mark) developed where I had the most itching - beltline, under the bust and on my back. As the scabies continued, more brown lines appeared.
The dermatologist said the discolorations were unrelated to scabies and DX'd seborrheic keratosis.
Over time, additional, larger spots developed on my arms, cheeks, forehead and back in addition to the thin lines that seemed to appear where the itching was located.
Tried to upload images to my profile but kept getting "500 Internal Server Error". Linking here instead:
Arm -- https://drive.google.com/file/d/1CrCwFUB7kYqR-2lj0tOC8TnCwIdlfwWS/view?usp=sharing
Back -- https://drive.google.com/file/d/1Cvyvu-ugbZut3KFV0uEYxk-UX1iX75Rq/view?usp=sharing
The size, number and characteristics of my spots seem very mild by comparison to UP right?
IDK if it's actually seborrheic keratosis either or scarring from my scratching scabies all of the above plus freckles.
This example, however, looks similar to what showed up on my face a few days after the injection of Ajovy: http://mddk.com/wp-content/uploads/2014/12/urticaria-pigmentosa-pictures-2.jpg
Those were more like blisters and eventually went away.
BTW the dermatographia, if memory serves, was related to Lantana allergy.
Wherever it touched my skin it left a trace.
There are "phases" I seem to go through, or cycles where I can go outside in summer, get a few mosquito bites and I'll be fine, but another day I may go out for 5 minutes and after a couple mosquito bites I wind up with welts or my entire arm is swollen and I'm reaching for the epi-pen and Benadryl.
Then again, I just remembered that I had chicken pox at age 4, tonsillitis from age 6 off and on until they were removed at 26, mono at 14 and shingles at age 20 while I was pregnant and had active shingles during my C-section.
Looking back, the cycles didn't seem to have many/any breaks in between.
I'm starting to feel relieved at the possibility of having some answers and at the same time a little overwhelmed and concerned about translating the progress made here to my IRL dr.
I have known that things haven't been right for - forever.
It is almost impossible to find a curious mind. I'm grateful and cautiously optimistic. (I know, I still have lots to do) Thank you
Around 2015, I noticed a spot on my face I thought was a large freckle. The next year a spot developed on the back of my hand. Then came scabies and dozens of dark spots (some round, some narrow lines like a pencil mark) developed where I had the most itching - beltline, under the bust and on my back. As the scabies continued, more brown lines appeared.
The dermatologist said the discolorations were unrelated to scabies and DX'd seborrheic keratosis.
Over time, additional, larger spots developed on my arms, cheeks, forehead and back in addition to the thin lines that seemed to appear where the itching was located.
Tried to upload images to my profile but kept getting "500 Internal Server Error". Linking here instead:
Arm -- https://drive.google.com/file/d/1CrCwFUB7kYqR-2lj0tOC8TnCwIdlfwWS/view?usp=sharing
Back -- https://drive.google.com/file/d/1Cvyvu-ugbZut3KFV0uEYxk-UX1iX75Rq/view?usp=sharing
The size, number and characteristics of my spots seem very mild by comparison to UP right?
IDK if it's actually seborrheic keratosis either or scarring from my scratching scabies all of the above plus freckles.
This example, however, looks similar to what showed up on my face a few days after the injection of Ajovy: http://mddk.com/wp-content/uploads/2014/12/urticaria-pigmentosa-pictures-2.jpg
Those were more like blisters and eventually went away.
BTW the dermatographia, if memory serves, was related to Lantana allergy.
Wherever it touched my skin it left a trace.
There are "phases" I seem to go through, or cycles where I can go outside in summer, get a few mosquito bites and I'll be fine, but another day I may go out for 5 minutes and after a couple mosquito bites I wind up with welts or my entire arm is swollen and I'm reaching for the epi-pen and Benadryl.
Then again, I just remembered that I had chicken pox at age 4, tonsillitis from age 6 off and on until they were removed at 26, mono at 14 and shingles at age 20 while I was pregnant and had active shingles during my C-section.
Looking back, the cycles didn't seem to have many/any breaks in between.
I'm starting to feel relieved at the possibility of having some answers and at the same time a little overwhelmed and concerned about translating the progress made here to my IRL dr.
I have known that things haven't been right for - forever.
It is almost impossible to find a curious mind. I'm grateful and cautiously optimistic. (I know, I still have lots to do) Thank you
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