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Old 02-24-2011, 03:34 AM
Poetist Poetist is offline
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Join Date: Aug 2010
Posts: 109
10 yr Member
Poetist Poetist is offline
Member
 
Join Date: Aug 2010
Posts: 109
10 yr Member
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Well, I pretty much said what I said to work things out in my head.


Quote:
Peripheral weakness can be caused by many things, as can a more one-sided weakness. Some people with MG have a dominantly weak side. Peripheral nerve problems can be caused by things like a B12 deficiency or a full blown disease state.
I received part of my old records (21 years ago) from my very first neuro, and he was thinking pretty much of everything (peripheral neurapathy, MG, MS, and stroke). I just never understand his thick accent. He ran B12 deficiency and that was normal. Nerve conduction test was borderline abnormal and the EMG was abnormal. He indicated I reported that my right eye was at one point hard to open, but it resolves itself in about two weeks. (In actuality, I was later diagnosed with Bells Palsy, because the droopy lid came back, two times.) After about year of this, I stopped going to the neuro, because I could finally lift my leg without as much effort.

Quote:
Leave all of this up to professionals to ferret out. Write down what exactly your daily symptoms are. Get a 2nd opinion on the MG, if it helps.
Over the span of 22 years, I've seen 5 neuros because I'm that much of a freak of nature. Next week, I will see my 6th neuro.

I really have experience very strong attacks to my body. I was walking one day. The next day, my right side is nearly dead weight. Quickly, I regained strength but it did not return to 100%, but I was okay with that. It was better than the alternative. (No, it was no stroke or tumor on the spine)

Twenty years later, I wake up literally fighting to breath. I was told I had pneumonia and everything else. I demanded they check my chest, and low and behold there was the enlarged thymus. Then, that was the "first" time I heard MG, but I was more concerned with my breathing/removing the thymus oppose to the muscle weakness, that I have lived with for years.

Quote:
And get your medical records so that you can FACTUALLY figure out what is going on. Guessing doesn't do you any good. In fact, it may simply contribute to stress and make things worse. I hope you will get opinions from a couple of doctors. Start with the MG diagnosis, get someone to explain it and go from there.
I just ordered hopefully my last batch of records, so I can give it to two of my neuros. I am not really guessing. I have just been pointed in so many directions. To this day, I get people saying I should get my (5.7 cm) thymus removed, even the tiny voice in my head, but the doctor said it was not malignant or growing as he initially thought, so it is not necessary. Then, I get doctors telling me I am/I'm not a person with MG, when that is not in the forefront of my mind, so going to doctors have left me with more confusion than solution.

Next week, I am aiming to see the guru of MG in hopes that he can put to rest this thymus issue I have, which I truly believe has affected my breathing to the point that I need medication in order to support the muscles around the lungs.

All I want is to be able to breath without feeling as if the medication is a bandaid for some underlying issue.
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