NeuroTalk Support Groups - Please help! MG question...

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Thank you all for your thoughtful responses. I am so grateful for this community and clearly your experience speaks volumes. As many of you know, this process can be especially lonely and frustrating. My friends are frustrated that I am not better yet and if I'd only do more yoga, meditation, fill in the blank with said suggestion.....Ughhh, they think it is frustrating?! And trust me, I value all of those therapies but as of yet none of them have restored my eye functionality:Sigh:

The neuro did up my dose and gave me a lot of autonomy with respect to playing with my dosage but said not to exceed 180mg/day. Is this still low?

Per all of your suggestions, I am slated to see a neuro-opthamologist tomorrow. My area was enormously affected by Sandy so let's hope I can get there.

Thank you, again, for sharing your perspective and the support. It means so much.
:hug:

neuro-opthamologist is a great choice. Mine gave me Prednisone and it cleared up my double vision It never came back after 2 years but still fighting MG. Good luck tomorrow.
Mike

Thanks, Mike.

My dble vision/blurred vision is killing me at the moment. My rheum prescribed a 10 day course of prednisone but the neuro said, "no way...if we go that route we are going to do a long course/taper"....He also said, "let's keep you on the mestinon for another month before we decide". I feel like we are wasting valuable time......

Any advice?
Thanks.

My neuro-opthamologist put me on 80mg of Prednisone. When my vision returned we tapered off. I have since gotten Prednisone 60mg to try to get my MG under control. After being on that dose for a while it was killing the muscles in my legs. Reached a point I almost had to get a wheelchair. I'm down to 20mg and doing pretty good. We are still tapering. Cutting 2 1/2 mg every 3 months. I didn't drive for one year due to double vision.
Mike

Quote:

Originally Posted by Needananswer (Post 925863)

All-

I apologize in advance as I suspect this question may be regularly asked, but I'm desperate for help.

I am seronegative for all antibodies related to MG including Musk and Lems ( I tested positive just barely for the striated antibody but the dr told me that was insignificant).
I have had 2 single fiber EMGs and both were unremarkable.
My PFTs were normal.
CT of chest was normal.

I do have celiac diseasee, pernicious anemia and a history of graves disease (my Thyroid has normalized and I am off all meds for that which is great though I do have 2 small nodules).

My left eye has been very droopy for over a year and recently became much worse. My right eye is also droopy though not nearly as bad as the left. EVERYONE comments on the change in my appearance. I was a successful model for many years and my eyes were something that landed me regularly in magazines and on national billboards. I look vastly different now ( like I am on drugs or severely exhausted/depressed). I also experience dble vision very regularly.

My speech becomes very slurred fairly regularly and, less frequently, my breathing is a little labored.

I am exhausted. I am an avid athlete and yet I'm completely exhausted all the time and recently filed for disabilty from the job I love. I feel so sick!!

I have seen 2 neuros for an opinion. One, a leading MG expert, totally dismissed MG based on the fact that my bloodwork/nerve studies were clean. Despite ptosis, he said my eye looked "fine" which i assure you it does not.

The other started me on very small dose of mestinon (30mg 2xday) which did nothing. He then upped it to 30mg 3x day and I feel a wonderful and significant improvement but it runs out quickly and symptoms come bk after just 3 hours.

My questions are:

Is this MG despite the normal bloodwork and nerve studies and opinion from MG spec at leading institution?
Does a good response to the mestinon confirm a dx?
Should I concurrently be on prednisone to try and get at the underlying disease?

My deepest appreciation for any advice and apologies if you have fielded this question before. My dble vision is bad enuf that looking thru the threads is too much for me at the moment.

Many thanks,
Needananswer

Did your doctor perform a tensilon test?