Could I have Myasthenia Gravis, please help!

[LPLx]

Hi everyone,

I wonder if you could help me out. Could my symptoms be related to Myasthenia Gravis?

I've been very sick for some time, which has got progressively worse over the years (7 years now, the last 2 have been very bad). I've started to attach my symptoms to acetylcholine as when I eat foods high choline or take choline supplements, I get severely depressed, diarrhea , cannot breathe, itchy everywhere on my body, weakness in my body and I cannot hold things, my eyes, lips and nose go crazy with twitching, extreme brain fog, extreme rashes and hives that bleed, and the body temperature goes a bit crazy. I also can barely walk due to the weakness in my legs. I'm so hot, sweating like crazy and then i'm freezing (like I have hyperthermia). I write a food diary everyday and i'm not in a financial position (sadly), to do much about this condition. I haven't had much help on the NHS, as my normal blood tests aren't really helping me, although I could push a bit more with it and I will have to, I just don't have the strength to fight for it anymore.

All my tests have shown little bits here and there, such as lower cortisol, hormone problems, cysts on my ovaries, sinusitis inflammation in my brain, a weak positive ANA test, high gut inflammation (which has now gone). I've been drinking chamomile teas when I feel (what I think is) the choline going up and it really helps to help me out. I've had so many blood tests, chest x-rays etc... and nothing.

Do you think it's worth me doing a test for Myasthenia/see a rheumatologist privately?

Update - a few things I forgot to mention: I am on natural thyroid medicine, I have had a reflex test and the lady said it was the lowest she'd ever seen, I have now come off anti-depressants (because it was making my situation worse), but now I feel like these were blocking choline, I can barely eat anything with it now. I do have hormone problems (low estrogen & progesterone), i'm 27 so not normal. I have had all the standard antibodies for autoimmune diseases, other than the ANA, none were positive. Likewise, i've had heart palpitations for like 7 years, on and off.

Any help would be greatly appreciated.

All the best,

L x

[piglette]

I would definitely try and get a test for myasthenia gravis. It is worth paying out to a private consultant in my opinion. I had the same problem went on for months and months, I could hardly move in the end. Saw a private rheumatologist in the end and he diagnosed PMR in about thirty seconds.

[LPLx in reply to piglette]

That's really great to know and really good news to hear you got the support that you needed in the end!!

I think you're right. I'm wondering if I should see a neurologist or a rheumatologist, i've done an antibody test for all the standard autoimmune conditions and nothing seems to have shown. I do, however, have sinus problems and swollen lymph nodes in my stomach, i'm not sure if that rings any bells at all?

Thanks so much for your encouraging words!

All the best,

L x

[piglette in reply to LPLx]

I think a neurologist is the best person to see. You can probably find one attached to a private hospital. Good luck.

[LPLx in reply to piglette]

Sounds like a good idea!

I think you're right. So tough being sick and then having to find the payments too. You're selling all our old bits in our home to help me out haha!!

Do you have any recommendations or know any good ones in London/surrounding areas?

L x

[piglette in reply to LPLx]

If you are near London you are probably close to the best neurologists in the world.

dementech.com have some info. WheneerI have been forced to go private, I have found a visit is normally around £250. I have then been able to go back to my GP on the NHS. Although the NHS seems to be slowly disintegrating.

[tallyho]

Has your thyroid been tested too?

[LPLx in reply to tallyho]

Yep! Sorry I should've mentioned that. I literally couldn't breathe at all and was getting all thyroid symptoms. GP said my thyroid was fine, so I went to a natural specialist and they put me on natural thyroid hormones (as they said my hormones were low, despite my TSH at 2-3) and it helped a lot. I can now breathe a lot better and don't feel like a balloon when I drink water and can eat food, so it was worth it. My body is a major mystery.

I do feel like I struggle with my neurotransmitters (sounds insane when I say it, but I literally journal everything and listen to how i'm feeling, research everything and obviously have tried so many natural thing that seem to keep me somewhat stable). Notable, I can't take too much thyroid hormones or other vitamins/food as I react like crazy, as I do to most things at the moment, but a small amount helps a lot. I wonder if I said go and see a neurologist?

Thanks for your help,

L x

[CDreamer]

Hi - it’s worth getting a test for sure but I would visit the Myaware website as there are a few tests now for various types of Myasthenia. May also be worth calling them?

One of the defining features of Myasthenia graves is descending muscle weakness ie:- legs would be last to go but there are other autoimmune conditions which would also fit your symptoms so you need someone who will listen & investigate & finding someone can take time.

I’ve had Mg for 7 years & I improve on choline rich foods such as eggs but we all react differently.

I see a neurologist not rheumatologist, although I did see one recommended by several local people with a diagnosis of Myasthenia - I wasn’t impressed. My neurologist diagnosed on clinical exam & treated immediately. I also prefer the drugs neurologists work with rather than those designed for RA although there seems to be some cross over.

I would also look at Autonomic Dysfunctions as a possibility, if you haven’t already.

My Mg symptoms were descending muscle weakness - Ptosis followed by double/quadruple vision, facial muscle weakness - left sided face dropped, swallowing problems. Legs have occasionally let me down but it’s a sudden not working so I fall - 4 broken bones so far & 1 shoulder dislocation.

No rashes, no itching, 3 occasions when breathing was marginal but that was connected to heart arrhythmias but muscle twitching at night seems to be a common factor with many Myasthenics.

Know that private consults are good for diagnosis but treatment for chronic conditions are expensive to fund privately & not covered by health insurance.

It’s horrible not knowing what is wrong with you so hope you find answers soon.

Best wishes

[LPLx in reply to CDreamer]

Thanks so much, this is really helpful. I think I will see a neurologist. It's great to hear you've found the right support for yourself. Yep, i've come to realise how difficult it truly is! I've started to think of business from home ideas just to fund it, but i'm on sick pay at the moment, doesn't help too much either (it's something though and i'm grateful for it).

Yes, I think for now, i'm going to keep going with the dietary changes and natural herbs that're helping me and don't venture out of this until I get the right help. That's really good to know about the eggs... eggs triggered me like crazy! Had to go vegan in the end and it seems to keep me alive haha!

Yes, I can relate to the falling over. I'm so extreme that I don't eat anything that triggers me, but sometimes I get on a rollercoaster, because obviously then other areas of the body get impacted and I need my nutrients etc.

Ugh. The joys, ay! You find a new normal, I guess!

All the best on your journey,

L x

[Goldyukr]

It seems some of your symptoms do sound like MG, but others do not. I’m sorry you are suffering so much. I don’t actually have MG but I do have neuromuscular junction dysfunction so it’s similar. Mine was actually diagnosed not by a blood test but by and EMG. They are not pleasant as they put needles in your muscles and shoot little bits of electricity. But i am thankful because it showed the problem. My MG test was negative as have been pretty much all blood tests in the past. Blood doesn’t show everything. Rheumatologists thus have no interest in me as they rely solely on blood tests usually. I was diagnosed by a neuromuscular specialist (but in the US). Keep us posted.

Also - as one other person mentioned here, check out autonomic problems. I also have dysautonomia which I had no idea. A lot of times these are overlap syndromes/conditions so it’s hard to pinpoint. It takes so much time and frustration.

Personally i have found that handling naturally has done very little to help. Other than gluten free. As much as i wish i could go that direction, it’s medication that has made the biggest difference for me.

[LPLx in reply to Goldyukr]

Thank you so much for your story and lovely message!! It makes you feel like you're going insane, doesn't it? It's like, I feel horrendous but my tests aren't matching up. Likewise, I had the same with my thyroid, my doctor is based in CA. Why is it that the US (in some sense) seem to have very alternative and open doctors in comparison to the UK? Very tough, ay!

Do you think a neurologist would take a look at my case?

All the best,

L x

[chrisj]

My mother was diagnosed with MG.

Her symptoms.....weakness, lack of muscle strength, difficulty in swallowing her food and slightly drooping eyelids. She was unable even to hoover her strength was pretty much gone. She was hospitalised and diagnosed with MG. See your GP/doctor.

[LPLx in reply to chrisj]

Thanks for your message - really great to know the symptoms and i'm glad your mum has the right diagnosis! Sadly not having much luck with my GP and the waiting lists aren't too fun either, think i'd rather go private at the moment, just need to figure out how to do it financially haha!

All the best,

L

[Blueoxo]

Hi, sorry to hear you have been feeling so unwell. On reading your post it got me thinking about the natural thyroid medicine your taking, is this a replacement therapy, just thinking this could be the cause the diorreah, feeling hot and then cold etc. If your blood test came back okay for this, taking a natural replacement could be swinging you between under and over active. It could also explain the brain fog, sweats, fatigue etc xx

[lighthousepoet]

Yes there is a good possibility that you have Myasthenia gravis, I would also ask to be checked out for Lyme disease. There are a number of symptom cross overs. So you could be unlucky and have both. You may have been bitten by an infected tick years ago and have been carrying the infection for all that time and it is the Lyme disease that led you to acquire Myasthenia gravis.

[Springtimeholly]

Hi, LPLx. Your post stood out to me because I have so many of the same symptoms and have been dealing with them for 7 years now. I have been worked up for MG, but even those tests came back normal. I had a SFEMG that showed some abnormality but not enough to diagnose. Ugh Have you learned anything more about what’s causing your symptoms?