Normal CBC, TSH, multiple painful lymph nodes, neck, legs, arms increasing in size

[fritochip]

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)

[Ken_PA]

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.

[fritochip]

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

[Ken_PA]

"...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.

[fritochip]

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.

[Ken_PA]

"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.

[Ken_PA]

"Often get [swamp] sand/dirt on my feet."
That probably explains the nodes in the legs, which had been a mystery.

[Ken_PA]

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.

[fritochip]

"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.

[Ken_PA]

Leg nodes: are you walking around outdoors without shoes?

[fritochip]

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.