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
"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
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
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
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
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?
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