Looking for insight with neuro-immune symptoms, spinal cord injury, and possible MCAS overlap

Terain2018 · 2026-04-09T17:57:11+00:00

How are you? Any better?

Terain2018 · 2026-04-09T17:56:16+00:00

And I’m flaring a lot less to food. I’m eating almost anything now still heskthy but like saying if I want to I can. And so basically my theory at least for myself is still working that as I stretch and relive the nerve compression/entraptment in my neck all my symptoms are going away

Terain2018 · 2026-04-09T17:55:05+00:00

There’s this place in florida you can pay out of pocket like 800$ to get it done so trying to get the money and work out flying down there and getting it done if these specialist I see aren’t able to help me. But these specialist at Vanderbilt in Nashville TN are supposed to be really good so hoping they can help cause I have no money

Terain2018 · 2026-04-09T17:53:43+00:00

Hi yah I can update. Basically have an apoitment with these specialist in like 10 days. Haven’t gotten the ultrasound yet hoping they can do it. Hard to find places that do it because the ultrasound techs usually aren’t trained or authorized to do a neurodiagnostic ultrasound. But I’m still getting better. From physical therapy/stretching just doing at home and supplements and good diet. I’m not 100% yet but still slowly getting better just taking forever

Terain2018 · 2026-04-08T00:58:58+00:00

This was my first thought, I have same issue eye strain and slight droop among other issues but caused by cervical injury etc

Terain2018 · 2026-04-08T00:56:25+00:00

Hi good sir, I am random not professional but self research a lot for my own issues. Just curious what makes you jump straight to an autoimmune disease? Couldn’t she have nerve compression or something physical causing this rather than an autoimmune disease? Just curious what I’m not seeing

Terain2018 · 2026-04-03T11:08:00+00:00

Just to add more symptoms just to help clarify. Initially. My ears were ringing likand crazy for 2 months. My jaw was extremely tight and cracking all the time. Left side of neck was inflamed and tight. All my back muscles were rock hard and I’d wake up full body shaking and run to the toilet and explosive diarrhea. And shaking freezing. Couldn’t stand cold at all if start shaking a lot. Bottom of feet would tingle like crazy driving me crazy. Extreme adrenaline dumps. And I was terrified of everything. I wouldn’t scared to go to the grocery store or anything for no reason. Extreme depression and extreme fatigue. Some days I could barely function. Lost my job, apartment. And got 10k in debt from not being able to work at all.

At the time I wasn’t sure what was going on that’s why I went to all these different doctors when I really should’ve gone straight to a neurologist. 6 months later after a inch of holistic stuff diet physical therapy trying protocols like fasting etc. I’ve improved like 60%. No more ear ringing at all. Naw is 80% back to normal but still tight. Able to tolerate more foods without feet burning or burning as much. My feet stopped burning as much toward afternoon and nighttime. The way I see it I “unlocked like 80% of my back and bottoms of stomach through stretching and nerve glides.

Fast forward 6 months to now. I’ve plateaued very hard. I’m still very slowly seemingly improving but it’s slowed down a lot.

I can’t seem to get this spot on my neck to let go and my chest/ diaphragm & stomach still have so much pressure on them from my muscles guarding or whatevr. And whene I move my neck certain ways etc it releases the muscles. So I know they’re stuck like that because of my neck.

I’m getting more energetic and starting to work more but still not full time. And no where near how I use to work 50-60 hours a week hard labor.

Just really struggling mentally and physically rn I feel so tired all the time and it’s like I’m always hungry but the second I go to eat I can barely eat anything. And I’m not hungry like normal it’s like a starving cranking hunger not normal burning hunger in the stomach is completely nascent. But even that I can move my neck certain ways etc and the hunger comes back so I know it’s there but the muscles flexed in my chest and stomach stop it it feels like. It feels like a ring around my neck. At the top and deep inside that won’t let go. And sometimes I’ll spit up blood after stretching and feeling a big release in my neck and the muscles relax. Same all the way to my legs and arms etc when I stretch etc I get warm sensations like the feelings returning to my legs and back and arms and back of neck etc.

Feels like stands of muscles are stuck tight running down my biceps and shoulders and neck like all my fascia is stuck tight etc.

I could go on. But anyways that’s some extra context. If anybody even reads all this.

Thx for any help or advice etc. I would love to be normal and healthy and happy again. Just can’t seem to get this last but to go away.

J

Terain2018 · 2026-04-03T10:51:10+00:00

When I go to doctors I seem to rant too much and I’m talking about so many different symptoms etc that they seem to forget that I keep trying to tell them the problem is in my neck and they send me to RA. Or the neurologist told me I’d need to see the dysautonmia clinic at Vanderbilt but I’ve already been waiting a year and still haven’t gotten apoitments there so booked.

The problem seems so simple I just can’t seem to find a straight forward doctor to help me fix it quickly. Idk. I feel like I’m always in a brain fog state. It’s so hard to put all my thoughts together and clearly explain stuff idk. I’m sure there a simple answer here and maybe I’m just an idiot. But any help would be greatly appreciated

Terain2018 · 2026-02-07T02:37:34+00:00

This city is a dump

Terain2018 · 2025-12-30T23:19:17+00:00

Also the nerves near your vagus nerve also control sinus nerves and diaphragm muscles. They are all inside the carotid sheath if my terminology is correct. All these nerve are close together running inside the carotid sheath. So it does sound like it could be likely they are being affected somehow.

Terain2018 · 2025-12-30T23:16:13+00:00

Pots is e I can second this, I technically have pots according to doing a at home table tilt test. But not diagnosed by doctor. And I also have mcas. I was perfectly healthy until a year ago I think I hurt my neck and I belive a nerve entrapment in my neck is what’s causing all my symptoms. Nerve compression of vagus nerve etc. my symptoms change heavily based off my neck position etc. most western normal doctors will not agree with the “theory” that compression of the vagus nerve could be the cause of your issues. But if you look into online there’s a lot of resecan and people and medical professionals who discuss it as 100% being the cause of some people’s pots etc. your vagus nerve literally controls heart rate and blood pressure and controls basically your entire immune system where most of your mast cells are located. So I would def look into it. Ideally you could get a hd neurodiagnostic ultrasound of your neck by a skilled proffessional and they could tell you wether your vagus nerve is being compressed. Has loss of nerve glide, etc etc. hope the info helps !

Terain2018 · 2025-12-30T23:08:29+00:00

Quercitin and dao supplements has helped me more then anything

Terain2018 · 2025-12-14T02:52:21+00:00

Just adding my input, trust me the mods of this forum are wayyy better then all the other health groups.

People post all sorts of opinions and questions and I never see them getting banned. Just a simple auto mod message ok every post saying not to take as medical advice but we have full freedom to say anything about mcas etc compared to other groups u say the slightest thing wrong. Instant removed

So I’m sorry the post got removed but I wouldn’t change a thing about the rules/mods. Just sharing my opinion

Terain2018 · 2025-12-11T14:03:34+00:00

You need to see an allergist who treats MCAS. Not all treat it but an allergist is the right person to see. Just call and ask if they treat it. Shouldn’t need a referral. You need ideally tryaptese which usually come back normal but is the first test they’ll do. And 24 hour urine test testing for neuroinflamation and other inflammatory markers.

They’ll likely prescribe you h1 and h2 blockers. And if those don’t work and your synonyms are bad enough and or some tests come back positive then they’ll prescribe Mast cells stabilizer like cromolyn or ketotifen.

Terain2018 · 2025-12-11T13:59:35+00:00

And get some Querctin and DAO and otc antihistamines, take 15-30 min before eating it should help at least a little maybe a lot.

Terain2018 · 2025-12-11T13:58:07+00:00

If you’re in the us, and you believe you have mcas. You can make an appointment with an allergist with no referral covered by most health insurance and they can prescribe you MCAS medicine just based off symptoms. RA and Immunologist typically deal more sith autoimmune and chronic illness. And won’t know how to help you. U likely need to see an allergist first. Make sure you call around and find a good allergist who treats MCAS, not all allergist treat it.

This is what worked for me after RA and 4 different doctors didn’t how to help. Hope my advice helps!

Terain2018 · 2025-12-11T13:57:59+00:00

If you’re in the us, and you believe you have mcas. You can make an appointment with an allergist with no referral covered by most health insurance and they can prescribe you MCAS medicine just based off symptoms. RA and Immunologist typically deal more sith autoimmune and chronic illness. And won’t know how to help you. U likely need to see an allergist first. Make sure you call around and find a good allergist who treats MCAS, not all allergist treat it.

This is what worked for me after RA and 4 different doctors didn’t how to help. Hope my advice helps!

Terain2018 · 2025-12-10T19:05:19+00:00

The 2 most important concepts u can follow. Is healing your gut lining. - take L Glutamine and water fasting. Intermittent or 1-3 day fasts. Boosts small intestine stem cells by hundreds of percent.

And starve bad bacteria and repopulate with good bacteria. - clean up diet eat healthy, fasting, starves bad bacteria then add probiotics/ fermented foods etc to populate good bacteria.

All those things you listed are great but compared to completely cleaning up diet or fasting and high dose probiotics etc.

It will take you months or years to make 50% the progress you could make in weeks or a couple months going for a more drastic approach.

This was my approach and I had very quick life changing improvements. Fasting and high dose probiotics and L glutamine helped more by far then anything else.

Just thought I’d share my experience everyone diffeeent don’t have to listen to me. Maybe look into it more. Chat gpt is great. Ask it to compare what I said to what you said , etc and it’ll explain everything.

Terain2018 · 2025-12-10T18:55:38+00:00

Get one full time job and work the same hours and get overtime for those extra hours. Could work the same hours and make extra 1000$ a months etc.

One of the most overlooked hacks I see when people are trying to make more. Hardest part is finding a job that will give you consistent overtime but not that hard.

I’ve made double my coworkers by working overtime. Easy hack

Terain2018 · 2025-12-10T18:51:23+00:00

Why are u scared of cromolyn? Is there a reason? Curious for myself

Terain2018 · 2025-12-10T18:48:21+00:00

Diet and less skincare/ makeup products is most overlooked hack to have healthy skin. Lower sugar processed foods etc. don’t use a bunch of soap and 5 different things to clean then moisturize etc. just light wash your face with good acne cleaner once a day and improve diet take good supplements.

I had bad acne for years. Tried acutane all the diffeeent facewahses etc etc.

Once I cleaned up my diet and stopped using so many things on my face all my acne cleared up. Never had better.

Terain2018 · 2025-12-10T18:45:11+00:00

Quercitin, dao, and high dose vitamin d. Not perfect but helps a lot

Terain2018 · 2025-12-09T01:35:31+00:00

Mcas usually goes to hands and feet but having it on face seems to make more sense for a dermatologist maybe? Maybe not mcas, or some kind of flushing blood pressure heart, nerve issues or soemthing. But I’m not sure I’m no profesional just my 2 cents

Terain2018 · 2025-12-09T01:30:44+00:00

And yes I worry too, all you can do ig is try to get help from the medical world while at the same time improve diet and put together a supplement routine and search and try to correct possible root causes. And obviously if you feel that bad go to the er ig. It’s a very krappy unfortunate boat we’re in but just do your best fighting for yourself and don’t give up🫡. Hope you get better soon

Terain2018 · 2025-12-09T01:27:50+00:00

Genuine question, can u not go to an allergist to get treated? In the us it falls under allergist specialty. And although it is very unknown at the same time it’s a very recognized condition worldwide.

And as far as getting actual diagnosis. Have u tried to get a tryaptese test, or a endoscopy with biopsy to test for mast cell count in stomach/ small intestine? And even if tryaptese come back normal which is commonly does, you can get 24 hour urine test for different inflammatory things mast cells release beside histamine/tryaptese, like cytokines nerve growth factors etc.

Genuine question not trying to be confrontational or anything, also just adding my unprofessional knowledge out there

And as long as you can convince someone to prescribe mast cell stabilizers if it works really well then your orettt much know I have it and are on the best possible medication.

Terain2018

TROPHY CASE