Myasthenia Gravis

[peacequeen]

Hi everyone,
I'm new here but I'm so anxious, I just need reassurance, advice, just comfort from people who know more than I do. I just received a call the other day from my neurologist. They told me it appears that my lab work came back positive for MG She scheduled my ct and I'll get the results of that when I go for my follow up. Meanwhile, I have the cd and have been comparing it to every photo on the internet..not smart. I'm looking for that infamous tumor. I pray it doesn't strike me. I have just about all the other symptoms but the eye problem..I think. I was diagnosed with narrow angle glaucoma in spring '08 and had corrective surgery on both eyes. My problem is that with my glasses I see pretty good, without them I can't see diddly. How do I know if I have double vision? Is this something you get even with glasses? I know I definitely have blurred vision,,is that a symptom? I have noticed that my eyes are kinda drooping. Several people have told me they can tell, my husband says he doesn't see a difference. Does droopy eye effect you all the time or does it come and go? I notice my "light droopy's" late at night and it's not really bad. My right eye is worse than my left. The bottom rim of my lid hits right above my pupil,,is that bad? And when I try to look up, it feels like my lids are trying to push back down. Is there some way they could be wrong about my diagnosis? They called me and told me over the phone,,seemed like it was urgent,,my ct was scheduled the next morning but they gave me the cd. When I took it to the neuro, they said to just bring it to my next appt which is not till jan 14th..so maybe not so urgent. Maybe I'm in denial? I just went through a 3 month stress because some doctors said I had lupus ,then I was told by the specialist that they would rule that out for now..even though I have many of the symptoms and some of my bloodwork shows positive ANA. So I guess I'm waiting for someone to tell me I don't really have MG,,it's a mistake or something. I appreciate anyone who will respond with some insight.

[browen01]

Hello,
I've been on this post on and off since August of 08. Been to many docs too. My symptoms are muscle weakness, fatigue specific to the muscles used, SOB with moderate exertion, and mild eye droopiness. All tests, and I've had them all, come back negative. I've responded great to Mestinon however, and I'm thankful my doc let me try it. I too have a + ANA, but the rheumatologist I saw said that can be elevated in about 10% of the population with no known reason. Also my droopy eyes are not a daily thing. They are however worse in the evening or after I've tried to read for awhile. There are two good MG seminars on you tube. I listed them on a reply to the March 15 post "went off my meds" by Billie. Watch them, there very interesting.

[amm34]

Wrt MG, a postive antibody titer is diagnostic for MG, however a negative titer does not exclude it. About 20% are seronegtive, with on-ha;f of these MUSK +. ANA is a general marker that can be elevated for no reason or in many, many autoimmune diseases (RA, lupus, etc). This is not dx of MG, but can on occasion be elevated. Often times a ANA is used for screening b/c it is not very specific, then other more diagnostic tests can be run. However if you are postive for anti-ACh antibodies, yes, you have MG. I am the queen of denial, so I understand why you are looking for other options. There are a few meds that can give a false positive, but these are pretty rare. Penicillamine is one of these. I believe it has ben found in the lit that neuroblocking meds can also on rare occasions cause false positives, but this is not a common thing. Don't stress too much about the thymoma. They are very rarely malignant. In fact, if you have a true thymoma you are actually one of the lucky ones b/c that means a thymectomy would be very beneficial, unlike those of us with thymic hyperplasia, in which there are no conclusive studies to validate the efficacy. Thymectomies are really not that bad- there are new approaches that have minimal recovery time and scars. Hope things are working out for you now. I think it just takes a while to find a good protocol of meds that addresses your symptoms without too many side effects of hinderances on your normal life.