Myasthenia Gravis Support Group
Myasthenia gravis (MG) is a neuromuscular disease leading to fluctuating muscle weakness and fatiguability. The hallmark of myasthenia gravis is muscle weakness that increases during periods of activity and improves after periods of rest. Although myasthenia gravis may affect any voluntary muscle, muscles that control eye and eyelid movement, facial expression, and...
Hello guys,
I'm in diagnosing process for MG. EMG and AchR-A is negative for MG but my ACTH levels are high.
My symptoms are so similar to gonegirl3's.
-I've chronic gastritis and now I can't eat at all. No problem with swallowing but it's like I'm feeling foods solidness in my body so I prefer soft or liquid. I lost 7 kg. I'm pushing to stay on 52 kg. No medicine for stomach seems to work. (nexium -motilium)
-I'm a pro singer so it means my lower body is stronger than most of others. I feel like my diaphragm isn't working as its suppose to be. I'm having trouble breathing like it's not stretch enough for me to breath in-out smoothly.
-My hands are shaking, I feel the same shakiness and numbness around my knees, it's like my feet are lighter and harder to control. (didnt fall yet)
-My hands and feet are sweaty. I'm having night sweats. I'm always cold, like Im wearing thermal clothes even in 20C
- I cant tolarate any heat or cold or sleeplessness and cant do any work at all.
- 5 years ago I had a smiliar but lighter attack but doctors told it must be a viral infection. But than again 2-3 years ago I had a period with my right eyelid half dropped with blurry vision for two months, without any other symptoms.
So is there anyone else having the same symptoms, or have adrenal insufficiency with MG?
Thank you.
MG is an autoimmune disease, and often can be accompanied by other autoimmune diseases including thyroid problems (that I have) and others. The adrenal glands can be damaged from an autoimmune attack also--so one can't dismiss that these are both auto-immune problems with an immune system not working right.
Most of us begin treatment of MG with mestinon (pyridostigmine) for symptom relief and often prednisone or other drug to slow down the immune system.
Prednisone replaces the cortisol that is normally produced by the adrenals and so they shut down. We get adrenal insufficiency if we try to get off of prednisone rapidly as the adrenals don't start up easily again once they are turned off.
If you begin treatment for either MG or adrenal insufficiency the same medicine may be used for both -- prednisone. Not everyone is treated with prednisone as it has some stiff side effects especially at high and continued doses, but it often is the first one as it is faster to work than other pills.
I don't remember and didn't find much information on both problems in individuals, so can't help much.
Good Luck
Russ
I find it very helpful to hear other people's symptoms and such.
1. Did they put you on meds for MG? I take pyridostigmine (mestinon) and, combined with history of gluten intolerance, I almost instantly developed severe gastritis. (So severe, I had to bring a change of clothes with me when I left the house--and I used to have the cast iron stomach in the family! I could eat a plate of chili's, no problem).
OK: gastritis:
2. Please insist on seeing a Gastroenterologist. Diarrhea is actually serious when you have it more than 3x a week. You are losing a lot of important trace nutrients and further stressing your immune (MG) system.
3. There ishould a diet very specialized for our condition. I promise you it is
a) good for you and will help make you better
b) bore you. mentally, you kind have to switch from thinking of meals as a social, relationship, or entertainment, and see it as medicine. But it is MUCH better than feeling out of control and like there is no future.
c) once your gut heals, you can diversify.
OK, ready for a lot of letters?
AIP FODMAP
you really need a Gastro
AIP is for AutoImmune Paleo (no nightshades, tree nuts etc. and structure Paleo). FODMAP is kind of a strange one....But if you read the science (Check FODMAP Monash University) in the last 5 years. It eliminates a bunch of food items known to trigger gastritis symptoms (pain from spasms, or constipation or diarrhea) they are things that contain too much fructose, oligo-, di- and monosaccharides. Examples are onions, garlic, cauliflower. Items that are "greenlighted" are organic greens like spinach, lettuces, kabocha squash, lots of meats and seafood. NO food additives or sugar.
VooDooVox, I went from 3-4 days a week, multiple diarrhea bouts (no one knows what that does to your life until you live with it for weeks)...it is so painful and exhausting (huh?am I tired from MG or leaving half my body in the loo). ....then the diet, and within 2 weeks, the ONLY time (and every time) I get sick is when I break from the diet rules. And my MG is MUCH better! Good luck!!