To rogerm213

AnnieB3 · 10-09-2012, 09:24 PM

Hi, rogerm213. Welcome! I took your post in the sticky thread and put it here. More people might see it here.

Quote:

September 2nd 2012 I completed the Disneyland Half Marathon. The race was a bit of a struggle after mile 8 but I figured it was the heat. At that time I had no symptoms. 10 days later I was having blurred vision and I thought it was sinus related it will pass. A few days pass my vision is double and I am having a hard time keeping my eye open. I went to an eye doc who suggested MG and he sent me to an 2nd eye doc two days later who agreed and then on to a neurologist 2 days later. By then I was having symptoms in both hands and both legs. He confirmed the first two findings and did more tests and said I had classic symptoms and ordered plasmapheresis to begin on Monday October 1st two days later. By Monday morning I was at a point where buttering toast was a struggle. In two weeks I had gone from symptom free to crisis mode. I was told to start taking prednisone and began with 20mg every other day and I will be up to 80mg every other day within the next week.

Tomorrow will be my 5th and last plasmapheresis treatment and my vision has cleared up substantially. My hands are better and my right leg still is pretty weak. Found out today my ACHR Binding AB was 8.75 and while I know that is high I have no idea how high that is or if it relates to the severity of the symptoms.

The treatments are helping but I have a lot to learn about MG and I hope to learn more here.

I'm sorry you got bad so quickly but it's really great that you got help so quickly too. Did they give you Mestinon? Have they talked about any other treatments?

Give yourself some time to learn about MG. You're not doing well right now and need to rest as much as possible.

The antibody level does not necessarily have to do with severity of symptoms. You really have to go by how you are doing "clinically."

Keep asking questions. There are a lot of incredible people here to help and support you!

Annie

rogerm213 · 10-09-2012, 09:38 PM

Thanks Annie. I saw my neurologist today and I asked about mestinon and he asked me to wait. His reasoning is he wants to see where the plasmapheresis and prednisone take me and the mestinon will likely mask how effective the other treatments are working. He said if I really wanted to try it in a few weeks to let him know.

Roger

AnnieB3 · 10-09-2012, 09:50 PM

Do they have you on a short-term dosing of Pred? I know that you were in a crisis, so they wanted to get you to recover as quickly as possible. Did they do Solu-Medrol IV steroids in the hospital and then tablets after that? Are they planning on tapering the dose (how high is it?) after they see how you're doing?

Pred is not an easy drug to take on a long-term basis and comes with a lot of side effects. Mestinon is a good helper drug but doesn't address the immune process.

If you feel you need to, call your neurologist and ask questions.

Extremes of heat and cold can make MG worse. So can certain drugs, lack of sleep, infections, etc.

I hope you will continue to do better.

Annie

southblues · 10-09-2012, 09:54 PM

Wow, rogerm, you really got slammed fast. I'm sorry to hear it. I hope that you will be one of these people that gets it fast and gets totally over it just as fast.

rogerm213 · 10-09-2012, 10:01 PM

So far just the prednisone and the plasmapheresis. I started at 20mg of prednisone every other day for 3 doses went to every other day for 2 doses and I am now at 60mg every other day. Over the coming weekend it gets bumped up to 80mg until I see the neuro again in 4 weeks and if all is well then we taper.

This has all happened so fast I feel like I am on a roller coaster.

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