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Old 06-01-2017, 04:24 PM #11
AnnieB3 AnnieB3 is offline
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Before you are exposed to that many electromagnetic fields, ask your doctor WHY! Why all of the MRIs? Not everything is found on a scan. Will the cause of dizziness be found on an MRI? Highly unlikely. Besides, didn't you already have one (don't know which part of your body). You have the right to know why a doctor is doing tests.

When was your B12 checked? Recently? If not, they should check that again.

Many doctors tend to think multiple sclerosis instead of MG. It's as though they are in a state of denial about there being more than one cause for symptoms! Why else would he want to look at the entire central nervous system?! You have a positive MG test result. The chance of it being a false positive is very low. You should be seeing a MG expert.

There are muscles in the ear. Has the doctor thought of that? MG can affect any of our 640 skeletal muscles.

Perhaps you need a 2nd opinion before you end up having tests that may be unnecessary. Too much doctoring is just as bad as too little. In my opinion, some thinking before acting (by the doctor) may be in order.

Annie

Last edited by AnnieB3; 06-01-2017 at 05:09 PM.
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Old 06-01-2017, 08:13 PM #12
Aztecnitemare Aztecnitemare is offline
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These were ordered at the same time as the blood work. My most recent b12 was the 17th of may as was my vitamin d. He also did ANA and ENA which both were negative.
I just got the name of a neurologist who treats MG today. I just don't know of my insurance covers her so I have to wait for this doc to do his thing and then get a second opinion.
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Old 06-02-2017, 11:33 AM #13
AnnieB3 AnnieB3 is offline
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The problem with waiting is that MG is a serious disease if left untreated. Since you have already had what was probably an exacerbation and/or crisis, the chance of you having one again (especially in hotter weather) is great.

Why not call your insurance company? Make it clear that you need to see the MG expert right away. A patient has the right to have timely treatment. And you can see more than one doctor at a time.

The most important thing is to have a firm diagnosis of MG and have some form of treatment soon. You are in charge of your care, not the doctors!

Annie
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Old 06-05-2017, 10:39 PM #14
Aztecnitemare Aztecnitemare is offline
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Ann thanks for advice. I don't even know if the test is truly positive, it was only a .25 and Ive read posts on here that it should be higher. Haven't been diagnosed yet and don't get to see the neuro until the end of July.
In my original post I asked if that was considered a positive. Apparently even though .02 is considered positive per the test that isn't high enough.
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Old 06-06-2017, 12:00 AM #15
AnnieB3 AnnieB3 is offline
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The Mayo Clinic invented the test. Anything over 0.02 is indicative of MG. Period. What is important is not the degree over positive; the fact that it is positive is what doctors go by (plus the clinical exam). I'm sure they'll do more testing (SFEMG).

ARBI - Clinical: Acetylcholine Receptor (Muscle AChR) Binding Antibody, Serum

I dare any neurologist to argue with that.

Annie

Last edited by AnnieB3; 06-06-2017 at 12:40 AM.
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