[SoCalGirl42]

Hi everybody.

Here's my very long story.

I've had problems for years, that have gradually gotten worse. I think I've been tested for every autoimmune disease except MG. I finally saw a neurologist who seems to be taking me serious and I'm getting some blood work done. He asked for a Myasthenia Gravis panel 1, along with all the usual blood tests I've already had at least 3 or 4 times and which always came back negative.

At one point they thought I had Multiple Sclerosis, but a brain mri came out normal and it turned out I was deficient in B12.
Then they thought I might have RA because I have OA in my spine and shoulders along with all the other issues, but that also came out negative.

I really think this matches all my symptoms, and I hope this is it. I'm sick of doctors, and tests, and not knowing what's causing the problems.

I've been having problems for at least 10 years, I'm 51 now. I've had horrible fatigue since then, I don't even remember what it feels like not to be exhausted. The a couple of years ago I started having these weird bouts of overwhelming fatigue on top of the usual fatigue, where it was impossible to do anything, or even think.

My arms feel like I've been lifting weights for hours. Years ago I could do about an hour of physical work before my arms started to feel this way. Over the years, the time between using my arms, and them becoming tired and aching has diminished to the point of them feeling that way all the time.

I've started to lose my voice if I talk too long. But after an hour or so of resting and not attempting to talk, it comes back. There are certain foods that are hard to swallow and get stuck in my throat, but not all foods so I don't know if that would be considered a symptom of MG or not.

Some days I choke on liquids when I try to drink. I don't know if that's the same as not being able to swallow though, or considered a symptom. My memory is practically nonexistent and pretty useless, I don't know if that's a part of MG or not?

Anyway, I'm going to get the lab work done tomorrow, and should have the results within a week.

Sorry for the mile long post.

[richimahan]

Your story is mine, ours, and I appreciate your sharing. A professional in the performing arts and sciences (My career has been blessed, fruitful and rewarding, as I found a way to combine my music and the sciences.), being diagnosed with MG after most-disturbing symptoms, and now resultant treatments, medical with specialists, and therapists (mostly speech/swallow etc. therapists) for the past two years. Only this year, in July 2014, did I accept the disability and retirement. 20 years too early. Some days are life as a ragdoll, and every 4 days or so, I have maybe one good hour. I no longer frustratingly push-it, and am settling into new routines. No longer at my baby grand or prepping for a biology or medical lecture, or travelling everywhere, some days I accomplish a lot just because I had no trouble breathing that day, or could drive that day (I have always possessed new cars etc. and a mustang collection, but these days I am happy just to not have to call my driver haha, and be able to drive myself, even if it is only a block). The voice thing, well, as a vocalist and lecturer, I hope you know I surely truly empathize because your story is mine, on nearly every level. My advice : Stay informed, because insight into the condition allows more self-empowerment. Make your needs known, to your docs, to the therapists, to the nutritionists, to your shoppers, friends, family, drivers etc. Because MG is different for each person. My caregivers may one day have to simply cook prep and chop my foods, and then the next visit have to allow me to stay down all day and try to communicate with me to obtain what's up. God bless, and stay on, this is a GREAT resource and support group, with very fine, wise people on it.

[speedwaygriff]

Originally Posted by SoCalGirl42

Hi everybody.

Here's my very long story.

I've had problems for years, that have gradually gotten worse. I think I've been tested for every autoimmune disease except MG. I finally saw a neurologist who seems to be taking me serious and I'm getting some blood work done. He asked for a Myasthenia Gravis panel 1, along with all the usual blood tests I've already had at least 3 or 4 times and which always came back negative.

At one point they thought I had Multiple Sclerosis, but a brain mri came out normal and it turned out I was deficient in B12.
Then they thought I might have RA because I have OA in my spine and shoulders along with all the other issues, but that also came out negative.

I really think this matches all my symptoms, and I hope this is it. I'm sick of doctors, and tests, and not knowing what's causing the problems.

I've been having problems for at least 10 years, I'm 51 now. I've had horrible fatigue since then, I don't even remember what it feels like not to be exhausted. The a couple of years ago I started having these weird bouts of overwhelming fatigue on top of the usual fatigue, where it was impossible to do anything, or even think.

My arms feel like I've been lifting weights for hours. Years ago I could do about an hour of physical work before my arms started to feel this way. Over the years, the time between using my arms, and them becoming tired and aching has diminished to the point of them feeling that way all the time.

I've started to lose my voice if I talk too long. But after an hour or so of resting and not attempting to talk, it comes back. There are certain foods that are hard to swallow and get stuck in my throat, but not all foods so I don't know if that would be considered a symptom of MG or not.

Some days I choke on liquids when I try to drink. I don't know if that's the same as not being able to swallow though, or considered a symptom. My memory is practically nonexistent and pretty useless, I don't know if that's a part of MG or not?

Anyway, I'm going to get the lab work done tomorrow, and should have the results within a week.

Sorry for the mile long post.

so sad these stories . ive been getn worse for over a year .... today they wanted all medical records ~ and ordered m.g. bloodwork ... new dr same place by the way iam in so cal have a great nero ........... she said she will help me with ssdi ~ my thyroid tch low~ getn a sonogram friday ~ praying this the most painfull for me throat area ~ b12 and vit d very low ~ rt eye droopy~ numb leggs~ hands ~