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Old 04-21-2014, 02:15 AM
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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Hi, Pyr2. Welcome!

Have you seen a rheumatologist, or has it only been neurologists? If not, I highly recommend that.

With inflammatory disorders, there is pain involvement, as you have. A good rheumy will take another look at the Lymes and IgM.

http://www.mayomedicallaboratories.c...erpretive/8158

Until you figure this out, you need to reduce your workouts! If you have MG, you can go into what's called a myasthenic crisis. It sounds like you are having serious issues breathing right now. If you can't breathe well, no matter what the cause, that is an EMERGENCY. You need to go to an ER.

Tell the ER doctor that you suspect something like MG, due to how weak you are. Don't tell them what they "should" do, but this is what ER docs should do if they suspect MG. They should do a walking oximetry (that thing they put on your finger to check O2 saturation). They should do a pulmonary function test. They can do an Ice Pack test. If you have ptosis, they can put it on your eyelids to see if ice improves it. Sometimes they'll do an arterial blood gas, if your breathing is bad. They can also consult with neurology, but don't count on it.

A pulmonologist would be very helpful in evaluating what kind of breathing issue you have and what the possible causes are. MG patients need the basic pulmonary function tests (PFTs), plus MIP (maximum inspiratory pressure) and MEP (maximum expiratory pressure).

Do you have ptosis (eyelid drooping)? Take a photo of your face when you wake up, and then another later in the day. Look for any drooping of eyelids or eyebrows.

Have you had your vitamin B12 checked? Vitamin D? If so, what were the numbers?

A muscle relaxant would make MG worse!

Did they even do the acetylcholine receptor antibody tests (binding, modulating) or the MuSK antibody test for MG? What about the striated antibody test?

I don't know any MG specialists in your area. Any doctor can run the MG antibody tests, however. Do you like your primary doctor? If you can see them right away, ask them to do some of these basic tests (like B12 and thyroid). If you call first thing, they can usually get you in right away.

Someone needs to check your O2/oxygen saturation.

Does any weakness get worse the more you do? Sounds like it. Fatigable muscle weakness is the hallmark of MG.

I think the most important thing is to get to a doctor, or the ER. Please let us know how you're doing! I really hope someone can take the bull by the horns here and help you!

If you do have MG, heat will make it much worse. Don't push yourself until you figure out what is going on!!!

Annie

Last edited by AnnieB3; 04-21-2014 at 02:33 AM.
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