If steroids aren't working...
 

I'll try to be brief. = ) Have had a droopy eyelid for years when I'm tired. About a year ago, started having double vision early in the day and late in the evening. Didn't think much of it since my vision has been terrible since I was a child. Around May 2012 - the double vision became constant, along with some throat numbness (feels like I have to think to swallow) and difficulty breathing (catching a full breath most days is difficult for me.)

Neurologist ran several tests -was thinking I had MG but then blood work was negative and my MRI scan showed I had a rather large brainstem compression called a Chiari Malformation. This was believed to the cause of my symptoms and I had decompression surgery in October 2012.

While I was home recovering from the surgery was the first and only time my symptoms got better since they started, but as soon as I went back to work, they came back with a vengeance, plus a new left side limp that comes and goes. I figured that was part of the surgery but my surgeon says it was not and sent me to a neuro ophthalmologist.

The NO says he is inclined to say I have MG whether blood work shows it or not and asked me to go back to my neurologist (the original one) and ask him to treat me for MG. I did and he started me on Cellcept and prednisone with the prednisone only for a month. I have noticed no difference in my symptoms. I asked him to let me try Mestonin and he will do a trial, however says that it is very strange that I didn't respond to the steroids and that maybe that means I do not have MG. I'm so confused.

If I don't have MG, than what do I have? Neurologist is referring me to a neuromuscular specialist and we will see what's next. But I’m getting so tired of it all - just wish it would show up on a blood test and I could have a clear answer and try and get better.

I'm 34, work full time, have an hour commute each way and three children. I really need to know what's going on so I can get on with functioning. :winky:

How much prednisone did he put you on? Perhaps it wasn't enough to make a difference.

Glad he's willing to do a trial of mestinon to see if that helps. Best wishes!

Started at 50MG, tapering down each week 10 MG to 10.

In my opinion, that wasn't long enough to give the steroids a proper trial, nor was it done as typically done for MG. With MG, you begin low, and add slowly until improvements occur. Once stable, the dose begins to be slowly reduced to the lowest point of symptom control. You were dosed in the way is commonly done for inflammation, and inflammation is not associated with MG.

Hope this helps.

Interesting - thank you, yes, that information does help. = ) I'm new to this. Maybe a neuro muscular specialist will be a better guide for me than the neurologist? I hope, I hope. = )

Yes, a new doctor might help. So sorry about the chiari--that's a strange condition and the surgery is pretty intense, so I've heard.

It was surgery that kicked off my MG symptoms. Surgery is a common stressor to exacerbate MG.

kathie