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Old 08-22-2009, 11:02 PM
AnnieB3 AnnieB3 is offline
Grand Magnate
 
Join Date: Feb 2009
Posts: 3,306
15 yr Member
AnnieB3 AnnieB3 is offline
Grand Magnate
 
Join Date: Feb 2009
Posts: 3,306
15 yr Member
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Nicky, My first thought is for you to call your neuro.

Pred can make you weaker at first but after 3 weeks it should've settled down. However, everyone's response to a drug is different. And then there's the thought that Pred IS making you better but that now you need to back off Mestinon. DON'T do that without speaking to your neuro first! I am just throwing things out there and have no idea what is going on!

Did the doctor actually look in your ears? Maybe you have an ear infection too.

Because you are on Pred, an infection can be worse. You are immunosuppressed and can get infections more easily. Did they do a chest x-ray to rule out pneumonia or aspiration pneumonia? You don't have to have a fever when you have pneumonia. And often when you are on Pred, you won't! Do you have any signs of sleep apnea? Some people clench their jaw and mouth at night and that could be why your tongue muscle is weaker after sleeping. Any muscle that has sustained use like that will get weak. Maybe a sleep study is in order.

I can sit here all day and "guess" at stuff but what you really need is a very good internist AND your neuro. They need to check your breathing stats and oxygen saturation. That pins and needles could be from not enough oxygen. And because of the pale tongue, they should check your hemoglobin (basic complete blood count) and ferritin. Pred can cause a bleed - it did with my Dad. Don't panic!!! Just get some help at urgent care (because it's the weekend).

MG is going to fluctuate like that and often have no rhyme or reason. When I do something, like errands, I'm weak at the end of that day, then I'll get weaker the next and the 2nd day is often the worst. You need to kind of see how your MG is after doing things. You may need to cut back on activities when you are like this or you may get worse.

My neuro would not give me the Mestinon Timespan (aka Mestinon SR in Canada). It does not have reliable dosing, according to a lot of neuros. You can all of a sudden get too much of it, especially if you are taking regular Mestinon with it!!! My neuro, and I'm paraphrasing here, made it sound like it was playing Russian Roulette with a drug.

Most of all, rest as much as you can. Take it easy - I hope you are feeling better soon.

Annie
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"Thanks for this!" says:
Nicknerd (08-23-2009)