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...
Hi, brand new here, was just diagnosed with MG last week (after only a month of experiencing facial weakness and very minor swallowing issues). So this is really new to me, considering I had not heard of this disease just a couple months ago.
Anyway, my blood test came back last Thursday and my Neurologist (who had already told me in the office that my symptoms were indicative of MG) called me to confirm the MG diagnosis. But then just yesterday I got a message from the office saying my test came back with high levels of striational antibodies and I need to come into the office this week to discuss further treatment/tests. Sounded to me like they didn't want to talk to me on the phone about it, which of course put me into panic mode.
Since I already had a chest MRI scheduled for tomorrow, we decided to schedule my visit with the Neurologist on Friday after he's had a chance to see the MRI results. But in the meantime, I'm really kinda worried about what it means to have elevated striational antibodies.
From what I've read, it probably indicates the presence of thymoma, so I'm slowly accepting the fact I may need to have that surgery, but are there other complications as well?
My family and friends keep saying, "don't worry about it, just wait til you see the doctor" but 3 days without knowing how serious this could be is pretty scary, especially since I always assume the worst.
Any experience or words of wisdom would be appreciated!
-Anita
Anyway, my blood test came back last Thursday and my Neurologist (who had already told me in the office that my symptoms were indicative of MG) called me to confirm the MG diagnosis. But then just yesterday I got a message from the office saying my test came back with high levels of striational antibodies and I need to come into the office this week to discuss further treatment/tests. Sounded to me like they didn't want to talk to me on the phone about it, which of course put me into panic mode.
Since I already had a chest MRI scheduled for tomorrow, we decided to schedule my visit with the Neurologist on Friday after he's had a chance to see the MRI results. But in the meantime, I'm really kinda worried about what it means to have elevated striational antibodies.
From what I've read, it probably indicates the presence of thymoma, so I'm slowly accepting the fact I may need to have that surgery, but are there other complications as well?
My family and friends keep saying, "don't worry about it, just wait til you see the doctor" but 3 days without knowing how serious this could be is pretty scary, especially since I always assume the worst.
Any experience or words of wisdom would be appreciated!
-Anita
I had those SA too. They did image of thymus and no problems were found.
http://www.ncbi.nlm.nih.gov/pubmed/15767509 tells a little
Good luck
It was much easier when all I knew was I had a 'weird numbness in my face", and nobody knew what it was. Lol!
I have my chest MRI this afternoon, so I'll know more soon, hopefully not bad news, fingers crossed!
My theory is you can't read too much nor know too much about MG. The more you understand what is happening with your body, the more you can anticipate problems and feel like you are somewhat in control of your progress and actually talk to your neuro.
Breathing problems are main reason we end up in the ER. I was hospitalized early on because I actually believed my first doctor's prescription to take Mestinon at 60 mg every 6 hours. When I got my MG neuro, she explained that sometimes I should take 90mg every 2-3 hours and other times could skip it altogether -- more of an as needed medication like aspirin for headaches. She set the maximum limit I should take, and after that when I had breathing problems I just took more mestinon. Eventually prednisone worked and I got rid of my MG symptoms (replaced with another set of prednisone problems!).
You can look back at other discussions on this forum by using the search box. However, it is limited in how far it goes back and is not wonderful in finding things. I use a google site search instead -- something like this when I want to search on tapering prednisone
" Myasthenia prednisone taper site:www.dailystrength.org "
(don't click on this link as it doesn't do the site search, but type the whole part inside the quotes into a google search page). Almost everything has been discussed in detail over the years, and some of it quite intelligently!
Good Luck
Russ
Good gosh, we go from being perfectly healthy to a doctor visit every other day with no warning!
Even my doc is kind of amazed at how quickly this has unfolded for me. Prior to last Wednesday I thought it was probably just Bell's Palsy (and it had only been bothering me for about a month). At least now we know what it is..
And thanks for the encouragement Russ! Turns out I do have a mass on my Thymus so they'll be taking that sucker out. And the striational antibodies apparently is just a different "flavor" of the disease which can have implications for heart function, so now I have to meet with a cardiologist to make sure that all checks out. I may ask my doc about dosage for the Mestinon as well. I do pretty well on 1/2 tablet 3/day, but some days it's like it's not quite enough, and my afternoons are always hard, especially on my eyes since I work on a computer all day. I was wondering if it might be ok to take a little more when I"m feeling particularly off. Good to know that's a possibility.
It helps a lot having it all laid out so I'm not sitting here thinking worst-case scenario on everything. Not thrilled about having to have the surgery, but I'll live and there's hope it could improve things, so that's good!
Thanks all!