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...
Good Morning !
I'm new here today. I've been suffering for 9 months from something.......
I think I may have MG but not sure, I'd like to tell you all my symptoms and see what everyone thinks.
It all started just after Christmas I got really sick with a flu bug. All hell broke loose then. I started with vertigo & nausea. I have a numb / clumsy feeling right leg and foot. Sores on my scalp. Violent leg spasms in the night that are strong enough to wake me up (if I'm sleeping that is - sarcastic remark) LOL. Eyes are sore, feel bruised and hard to move. Face muscles feel exhausted like the sensation of it being hard to keep eyes open. I tire very easy, can't work because I tire like after an hour of any physical work. I find it exhausting to walk up stairs (I don't smoke). I feel short of breath and fullness under my breast bone. When I get hot..... everything intensifies!!!!!
My Doctor sent me to a Cardiologist, no heart issues. I've been sent to the ENT Doctor he said "he can't help me, most likely a balance disorder and wants to send me for an ENG test" (been waiting for 3 months and still have not got into get one). I was told to go see an Optometrist, I did, she says no problem with vision, however says my left eye - the eyelid is a bit droopy. (has been like that all my life- lazy eye - Amblyopia since childhood). Doc has sent me to the Lab so many times for various things , It's a wonder I have any blood left in my body ! Last week my doctor finally admitted that I should see a Neurologist, that I "may have MG or MS". He has sent me for another blood test (ACHR) and waiting now to hear when the appointment for Neurologist is.
If anyone could give me any kind of answers / advice it would be greatly appreciated. Does my symptoms suggest MG to you?
Like I said, I'm sick of not knowing.......
I'm new here today. I've been suffering for 9 months from something.......
I think I may have MG but not sure, I'd like to tell you all my symptoms and see what everyone thinks.
It all started just after Christmas I got really sick with a flu bug. All hell broke loose then. I started with vertigo & nausea. I have a numb / clumsy feeling right leg and foot. Sores on my scalp. Violent leg spasms in the night that are strong enough to wake me up (if I'm sleeping that is - sarcastic remark) LOL. Eyes are sore, feel bruised and hard to move. Face muscles feel exhausted like the sensation of it being hard to keep eyes open. I tire very easy, can't work because I tire like after an hour of any physical work. I find it exhausting to walk up stairs (I don't smoke). I feel short of breath and fullness under my breast bone. When I get hot..... everything intensifies!!!!!
My Doctor sent me to a Cardiologist, no heart issues. I've been sent to the ENT Doctor he said "he can't help me, most likely a balance disorder and wants to send me for an ENG test" (been waiting for 3 months and still have not got into get one). I was told to go see an Optometrist, I did, she says no problem with vision, however says my left eye - the eyelid is a bit droopy. (has been like that all my life- lazy eye - Amblyopia since childhood). Doc has sent me to the Lab so many times for various things , It's a wonder I have any blood left in my body ! Last week my doctor finally admitted that I should see a Neurologist, that I "may have MG or MS". He has sent me for another blood test (ACHR) and waiting now to hear when the appointment for Neurologist is.
If anyone could give me any kind of answers / advice it would be greatly appreciated. Does my symptoms suggest MG to you?
Like I said, I'm sick of not knowing.......
Have you had any answers yet? It sure is hard not knowing. I had lots of metabolic and malabsorption issues that masked my myasthenia until I had them all taken care of and was still weak with repeated exercise of my muscles.
You might try posting on the discussion board as there is more activity there.
Good luck with the detective work and find doctors who think outside the box and think of overlapping autoimmune diseases (I have four or five).
Flutebell
I did realize after I posted this originally that I posted in the wrong area. LOL'
I'm getting another MRI on my head done this coming Sunday. I think family doctor wants to check for lesions (MS). I think the first one I had was only checking for tumors.
I had an AChR test about 4 weeks ago, I should get my results when I see family doctor on Tuesday next week.
I finally get to see a Neurologist next Wednesday, YAY! Been a looooong wait for that. My ENT doctor said I needed an EMG test way back in June but I've not heard anything about any appointment for that. (I think they forgot about me). I'm thinking the Neurologist will want that test done and he may have some pull to fast track that. I'm a bit worried about this upcoming visit. This Neurologist is just a regular one (not specialized in MG) and also I see on ratings on the internet that he isn't very well liked.
So that's where I'm at ! Hopefully get some answers soon as I've only got worse since the original post was written.
I've been suffering from short of breath for about a month now. I have a heck of a time climbing stairs. I've been pretty much housebound. I get exhausted just doing the dishes. Yesterday I decided I would help my spouse with some yard work and I had to come in because I got really bad leg tremors, they scared me.
Hope your day is well, take care, talk again soon! :)
Good luck to you.
Sure you symptoms sound like MG, but then again so do alot of things. I had several random diagnosis before my blood work came back positive. Problem is, not everyones comes back positive when it is. But thats a story for another day.
Best of luck in getting the answers ASAP.