Swollen Lymph Node for 10 months?

[ajacobs3413]

Hello,

I'm a 32 year old woman and since April of 2018, I have been feeling extremely ill with a slew of symptoms that are not normal for me personally. Also, I never know if the symptoms I'm describing are all related, but since they are not normal for me and they all started at the same time (almost overnight) I usually mention them.

My first symptoms were swollen lymph nodes on the back of my neck which subsided about 2 months after first coming on, a swollen lymph node on the right side of my neck behind my ear that grew overnight and has stayed hard, fixed, and swollen since April, difficulty breathing (a painful feeling, like when you breath in very cold air) especially on exertion although I was extremely active and fit when the symptoms started, painful joints, face/hand/knee rashes, extreme fatigue and weakness (often cannot walk up stairs, cannot hold things for more than 10 seconds, cannot carry on a conversation for more than a few minutes without feeling exhausted, etc.), lesions in my nose and on scalp, itchiness which feels deep and "un-itchable"(if that makes sense!), restless legs, drooping of right eyelid and side of mouth. One of my most troublesome symptoms is severe, painful stomach aches upon eating or drinking anything, even water. The pain in high up, right below my sternum, and feels like my stomach is full of food, even after waking up and not having eaten for 10 hours. I also had low vitamin D (14ng/mL ref. 30-100ng/mL) and hypochromic, microcytic anemia when my blood was first tested. Both of which I was put on a supplement for, but have not felt any better with these supplements. I also went on antibiotics but did not feel better.

This might not be related, but I went to an oral surgeon in December and was told I have stage V TMJ derangement (severe joint deformity with degenerative condylar changes). The oral surgeon said he thought it was from an underlying autoimmune condition or degenerative disease).

In the past two months (since December 2018), I have been having really intense night sweats, a lower back discomfort that is not quite painful but instead a deep ache that won't get better with stretching, heat, massage, etc. and that is much worse at night/when lying down. and have experienced such worsening fatigue to the extent that I often miss work and have missed over two weeks combined since December. My PCP referred me to an ENT to have a lymph node biopsy a few weeks ago (he specifically mentioned Lymphoma), but the ENT said that because my lymph node was only 9mm, she would not biopsy because there would literally be nothing that would show up because it's not active. I had read a little about the sizes of lymph nodes in prep for a possible biopsy and had seen that it might be useful in some cases to biopsy if the lymph node is under 1cm? Also, I feel like for months and months the lymph node has been much bigger, sometimes people comment how they can see it.

I have been tested for a bunch of autoimmune diseases, as that was what it was first thought to be, but none came back as being positive (Lupus, RA, Scleroderma, Celiac, IBD, Thyroid Disease, Myasthenia Gravis), as well as negative for Lyme Disease, Mono, HIV, EBV, etc.

I have had some abnormalities in my blood in addition to the nutrient deficiencies, including very low ANA (1.27, 1:80), elevated ESR and CRP, elevated platelets.

My real question is...does it seem like I should press for a biopsy or some kind of imaging of my lymph node or of my back or anything? I definitely trust that the doctors I've seen know what they're doing, but I just feel so incredibly ill that my main concern is I will be unable to work soon and not have insurance for tests or treatment and so am trying to get to the bottom of it before this happens. My PCP didn't seem concerned that the ENT didn't want to biopsy and just wants to "wait and see" how I feel, but I don't feel like I have time to wait, as each day I feel sicker and less able to go to work, doctor's appointments (let alone do literally anything I used to enjoy doing!).

Thank you so, so much for reading through this and for any advice you might be able to offer.

[Ken_PA]

Now imagine a roughly similar thing happening from MCs in your GI tract. Pain, highly irritable, food sensitivities, no appetite.

In the lungs, something similar but with leukotrienes as mediators. Out of breath when passages constrict.

[ajacobs3413]

That makes a lot of sense!! And I do have all of those symptoms.

I did have an endoscopy and colonoscopy in November to check for IBD and Celiac. Though those were negative, on the pathology results for my stomach it said:

Sections (C, D) show fragments of antral/fundic-type mucosa
demonstrating moderate foveolar/pit hyperplasia and some smooth muscle extension within the lamina propria. There are minimal to mild chronic inflammatory Infiltrates with no neutrophilic inflammatory activity. There is no evidence of H. pylori organisms, glandular atrophy, intestinal metaplasia, dysplasia or malignancy. An immunohistochemical stain performed for H. pylori organisms is negative (C, D).

C. Stomach, antrum, biopsy:
- Minimal chronic inflammation and reactive changes, consistent with
reactive/chemical gastritis.
- Negative for H. pylori organisms.

D. Stomach, body, biopsy:
- Minimal chronic inflammation and reactive changes, consistent with
reactive/chemical gastritis.
- Negative for H. pylori organisms.

Does this fall in line with a Mastocytosis?

[Ken_PA]

"Yes, it is just random. Like sitting on my couch, walk into the bathroom and my face and chest is completely red!"

Okay, that opens the door for a firm diagnosis through blood tests. Not just by symptoms. Did you tell this to any doctor?

Mastocytosis means too many mast cells.

Do you get long term brown or red speckles on your skin? Almost like freckles. (Urticaria pigmentosa)

Can you draw a line on your sternum and it is pronounced and stays a while (dermographia)?

[ajacobs3413]

I do get speckles on my skin, especially face and upper arms, but the don’t seem to be raised up like in the pictures when I searched for Urticaria pigmentosa. And I don’t believe I have had dermographia. It seems like it turns white when pressed on, but doesn’t raise up.

[Ken_PA]

"I haven’t tested positive for the antibodies for any of those autoimmune disorders,"

Okay, good. Though keep in mind that this isn't autoimmune (which requires auto antibodies or t-cells). This is auto inflammatory, because mast cells go off too easily and too strongly.

Mast cells have many dozens of inputs (receptors) and hundreds of outputs (chemical mediators, such as histamine). They use those mediators to orchestrate other immune cells, even other MCs.

Btw, ~10% of normal people show ANA on tests but are completely healthy. It's not a simple thing.

[Ken_PA]

This is very important: do you flush spontaneously, without exercise or heat or any other trigger? Just out of the blue?
(mastocytosis)

[ajacobs3413]

Yes, it is just random. Like sitting on my couch, walk into the bathroom and my face and chest is completely red!

[Ken_PA]

"have general malaise after working out"
It has a name: PEM. Post Exercise Malaise.

Some say that if they push it, they dig a much deeper hole. Others don't.

Well, ajacobs, I think we are 85% to am answer :)  Just the details remain. Plus that little 'detail' of convincing your doctors.

I am very glad to be of help and this has been enjoyable...  because it's going so well :)

That's not a brushoff, there are still those 'more details'. And please ask any questions that you have.

[ajacobs3413]

I think so!!! This has been so incredibly helpful and I’m so grateful for all of these ideas! It has been very enjoyable, I finally feel like I might be seeing a picture form! You are amazing! :)

I did want to ask...  are there any tests you would suggest me asking my doctor to order?

Thank you so much again!

[Ken_PA]

React very badly to bee stings? Many allergies, with you or family? Odd immune system disorders like Raynauds or Lupus, Sjogrens?

[ajacobs3413]

I’ve never been stung by a bee, so I’m not sure. I do think I have some food sensitivities but probably nothing full blown like Celiac. And I haven’t tested positive for the antibodies for any of those autoimmune disorders, only weakly positive for ANA.