New to MG. lots of questions!
 

Hello, as of Tues the 3rd I was unofficially diagonsed by my neuro-opthomologist with MG. Ive been prescribed Mestinon and Prednisone to see if it elevates my symptoms.
The only symptom I have is diplopia [double vision]
I was recently discharged from Navy bootcamp for the double vision and all the navy doctors thought it was MG.
I got CTs done, MRIs done, Tessilon Test, and EMGs and everything except the EMGs came out negative [there was apparent weakness in both my arms that were tested], even the blood work. But my cilivan neuro-opthomologist said that 50% it won't show up on the blood work [they didnt tell me that at the VA]

Does anyone have diplopia and take these 2 medicines. If yes how long til its effective? I see him this coming Tuesday again. The medications have helped so might as lightening my double vision and removing the "tugging" feeling from the effected eye. And very slightly helping out my leg that has RLS/Shin Splints.

Will I develop any other symptoms?

If not MG what could possibly be going on?

Thanks in advance!

lilWeezey
 

My original symptoms were mostly eye problems, and weakness chewing. I went on to develop more generalized MG symptoms (arm weakness. speaking would be hard to speak clearly). Mestinon was very effective for the 1st year or so. Then it began to take more amounts per day. Mestinon begins in about 30 minutes or an hour after taking it, and last for about 2 hours. I am now at 6 6omg per day. Hope that's going to last.
You do sound like you could have MG, but you need a Nuro to help you.
Good luck with this. Ask questions anytime.
FREDH

My first obvious sympton was ptosis. During treatment this progressed rapidly to diplopia, then tunnel vision and other wierd vision symptoms. I tested positive on the blood tests. My neuro prescribed Mestinon and prednisone. I took the Mestinon the first day as it is supposed to have an immediate but temporary affect. It had no affect. I started the Prednisone the second day (and stopped the Mestinon). It immediatly clearing up the issues with eyesight but other Mg symptoms have gradually become worse.
It has also taken me 2 years to ween off the pred. I started at 80 MG a day and I am now at 10.

Hi, I'm still new to this myself. I can't take prednisone but I am on mestinon, 60mg every 4 hrs, while I gave found it has helped with my drooping eyelid it unfortunately hasn't done anything for my double vision. I hope you have more luck with it for your double vision.

Hi, LilWeezey.

Okay, so you have an unofficial diagnosis and a doctor thought that it would be a brilliant idea to give you Prednisone? Wow.

Prednisone is not only hard to get off of, but it can cause all kinds of serious side effects. Did he explain that to you? Pred is not to be taken lightly or prescribed as though it's candy!

The other problem with Pred is that, if you don't have an official diagnosis, it makes all of the signs of MG go away, as well as make any MG tests look negative!!!

Did they even mention having a Single Fiber EMG done? Did they only do the Acetylcholine antibody test? What about the MG MuSK antibody test?

Do you have any weakness anywhere? Shortness of breath? Issues with talking or swallowing?

If I were you, I'd find a MG expert and get a second opinion before exposing the body to such a potentially harmful drug such as a steroid!

Does your double vision go away when you close one eye? MG has binocular DV and when you close one eye, it goes away.

Having MG is a big deal, and there's a lot to know about it. And a good MG expert will want to make sure that you don't have Lambert-Eaton Myasthenic Syndrome or one of the Congenital Myasthenic Syndromes (genetic disorders that steroids are not used with because they're not autoimmune).

I hope you get a more solid answer and better advice.

Annie

Annie,

Please forgive me but I have to pick up one point, which has become a bug bear to me.Mg has binocular Diplopia 99% of the time.

Fatigable Monocular Diplopia is extremely rare, that translates to rarely diagnosed. But the only way that monocular diplopia can be fatigable, is through muscles.

New to this Forum, Hi I'm Ella
 

Good morning everyone, I'm new to this forum and not sure if I'm using this cite correctly. Quite frankly I'm to tired o read the instructions. For the past two years I have experienced several episodes of complete exhaustion, problems swallowing, muscle weakness beyond explanation, my head feels like it weighs 100 lbs, choking when I eat, even soft foods,constant spasms, and have no energy for several days that I can't even get out of bed. I have been seeing a Neurologist for severe migraines and was told this is my problem, never being told why I am so fatigued or being told by a Doctor that I must have a VIRUS, and there is nothing that could be done. Recently, I collapsed at work and the NEURO Dr. decided to run additional blood tests and has scheduled me for an EMG in 3 weeks. I had barium swallow to examine why I'm having problems swallowing, the Dr. told me to tip my head back slightly when I eat or drink, which does help, but not normal> and doesn't always work. The first blood test came back with a vitamin D deficiency and I as told not a big deal. I am waiting for the ArCH blood test results at this point. I have read several posts which indicate even if these tests come back negative I could still have MG. I am really frustrated. I heard one of the Drs suggest that it could be related to stress. I live in Georgia and I don't think there are any Doctor's equipped to make a proper diagnosis. Does anyone know of a good MG specialist? Growing more frustrated each day. thanks, Ella

new patient
 

If you live in south Georgia, and your primary doctors refers you, Shands hospital in Gainesville Fla is a great place to get a diagnosis.

good luck

Hi, I was wondering how you are doing? Did you get a definitive OMG diagnosis? If so, are you still in the OMG stage?

I was dx'd OMG (neuro-opthalmologist) for pstosis and double vision in June 2015, started Mestinon that September, and got the generalized DX (neurologist) this May. It was the heat and an extremely stressful 2016 that tipped me over to generalized. I'm only taking Mestinon and hope to continue this protocol as long as possible although some days (like today) I feel like utter weak crap (fatigue, limb weakness, pain). I'm also hoping to get a thymectomy done in the next few months.