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...

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Hetheric 06/12/2015

I joined this group in 2012 when doctors suspected that I may have MG. All of my test kept coming back negative and doctors kept bouncing me around. In the past 21/2 years I have been hospitalized 7 times for difficulty breathing and swallowing. I did not see anyone this past year because I was tired of not getting answers.
Three weeks ago, I had no choice but to seek treatment when I could not walk, breathe, or swallow. My antibodies have always been zero and for the first time in 2 years they came back with numbers!! They were low...binding 2nmol and blocking 17%. I did have positive striational muscle antibodies. According to the lab, the combination of the muscle antibodies and binding antibodies is indicative of MG. My new neuro said she felt "comfortable" with an MG diagnosis with these results and my presentation. My neuro does not feel strong enough in MG to start immunosuppression. And I'm scared to start it until I meet with a neuro knowledgable in MG. I am trying to get in with Dr. Weiss in Tampa. I refuse to go back to Shands after they told me to see a shrink and I had anxiety.

Finally getting affirmation that I am dealing with MG has been a blessing and a curse. Even though I have almost been dealing with this for 3 years, I had a lot of emotions when someone finally said "I agree that it is MG "
I am coming to grips with this being a lifelong journey instead of a blip in the road. Had a walker delivered today because I cannot stand for long periods and I fell the other day. Just taking it day by day....

HappyGuy007 06/12/2015

Glad you have finally received a diagnosis... Hopefully, your road to feeling better will begin as a result!! HG007

Rhanson 06/12/2015

It is a relief to have tests that force doctors to actually accept there is a disease--that it isn't all in our minds. I had something like that too when I first felt so tired and before diagnosis.

I would write Shands administration as well as the doctor who sent you to a shrink and tell them about your diagnosis, and tell them you think the doctor who treated you was incompetent and how he/she made you suffer for a long time and the doctor should be sent to a shrink for treatment for this kind of misdiagnosis!!! if you don't follow up, the doctor doesn't learn from the mistake.
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Remember, the doctor you had was the problem, not necessarily the medical center, so if it is closer and easier to get an appointment, it may be worth trying to find a different doctor there, plus with the tests, MG diagnosis is not really in question anymore.

Good Luck

chuckie1 06/13/2015

Thank God you finally have a diagnosis now hope you get the treatment you need and can start felling better.
I donot know if I should say congradultion or what but at least you have something to treat now.
take Care
Chuck

debbie1973 06/13/2015

I see Dr. Lara Katzin in Tampa at USF. I really like her. My husband & I moved to Florida a year and half ago. I was diagnosed at a University Hospital over 40 years in Sacramento CA. I had been in remission for 25 years when after a car accident 3 years ago it ended. My PCP sent me to a local neruo, I saw him twice, decided he didnt have the knowledge in MG to care for me. In that time my husband & I travel to Florida, liked it & stayed. I requested a appointment on line, & within 24 hours someone called. Now the Dr. I had has a teen was wonderful so when I left my first appointment my husband & I looked at each other & said we like her. She listened, didnt make me feel rushed. When I was first diagnosed there was just a tensilon test, no blood test. I didnt know there was a blood test till I started having symtoms again. Was googling going out of remission saw there was a blood test & had my PCP run it. I don't know enough about the blood test to know if the numbers would have been there before I came out of remission or not. I just know the doctor I saw twice seem to take me more serious on my 2nd appointment after the blood test results were sent to him.
Good luck to you.
Debbie

limpnoodle 06/13/2015

I was told to get counseling by several doctors three years ago at the esteemed Emory university in Atlanta. I was treated very badly for the remainder of my stay there after they came to this conclusion. I was willing to seek counseling if it would help. I even made an appointment when I got home.
When I got my diagnosis from my local doctor a couple of weeks later, it was bittersweet, but kind of euphoric at the same time.

ThisIsLife 06/22/2015

Wow you have been through so much, I cannot believe that they were not "comfortable" with the diagnosis for so long. I had generalized mg for years and my doctors were absolutely clueless (kept on getting tested for MS). But finally one neuro did the tensilon test and it was positive, and the mestinon worked and that was that, I got a diagnosis immediately. My bloods are all negative, but my doc said it didn't matter (this is a nyc specialist).

Tensilon test is when they basically put a needle in your arm and you become weirdly stronger for an extremely short period of time, it was like I became normal, and then it fades away. I am so so sorry you were put through so much to prove you had it, ugh. It is a blessing and a curse for sure. For years I begged to know why it felt like I was dying, then I was thrilled to know the answer. Now I am going through the "this is forever?" oh no.

So glad you got answers and hope you find a great doctor that listens to you and helps you. I went through the same, went to ER in severe desperate crisis (could not feel my diaphragm, could not breathe) and they thought I had MS or I was crazy. I hope you find a neuro that is very knowledgeable. Did they at least give you mestinon to help get you on your feet? I hope so!! Keep us posted!

Hetheric 06/26/2015

I am going to Dr. Weiss in Tampa on July 17th. I am currently on Mestinon 120mg every 4 hours. Hopefully I will get a better treatment plan when I see him.

ree221 08/13/2015

My Opthamologist noticed that my right eye is drooping a little. It also twitches often intermittently. I've been evaluated for MS but after the 4th neuro said it's not MS I had to just accept that I would still be in limbo not knowing what ails me.

My right side is very weak. I was diagnosed with a swallowing/speech disorder. Anyway, my eye dr. ran bloodword for Myasthenia Gravis and it came back negative but he told me not to bother with the Musk testing.

Does anyone know about the Musk test and how important it is or not that I have that done?

Any insight is greatly appreciated. Thanks!

Ree

stevebert 08/13/2015

Ree, I've never had the Musk test, but I do have a few questions. Have you ever taken Mestinon and did it help with the drooping eyelid and right side weakness? Do you have any double vision?

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