Topic: Myasthenia Gravis...I've just been diagnosed. Anyone have this? Depressed.
Hambone
Frequent Contributor (1K+ posts)
Member # 29535
posted
I had a doctor who was throwing out MG as a possisble diagonsis for me.
So, I went researching and found a lady who had been misdiagnosed with MG, but her REAL problem was iron deficiency. She was NOT anemic, but her ferritin level was bottomed out. She got iron infusions and ALL of the MG symptoms went away.
Soooooo, I had my ferritin levels checked, and low and behold mine was <1. It should be around 50-70. Once I supplemented prescription iron, my breathlessness and weakness got better, and the doctor stopped talking about MG.
Have you had you ferritin levels checked lately?
Posts: 1142 | From South | Registered: Dec 2010
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karenl
Frequent Contributor (1K+ posts)
Member # 17753
posted
Thanks for posting, never heard that before but sure will test my ferritin levels.
Maybe it is also important for all lymies as they all have weakness and breathing problems. Most doctors never test for ferritin.
Posts: 1834 | From US | Registered: Oct 2008
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No one should underestimate the ability of lyme to produce symptoms of various "autoimmune" syndromes.
The danger of the confusion over infection-driven autoimmunity is that steroids will be used in the treatment.
The information I read about MG is that a normal life span is possible.
If lyme can imitate ALS, MS, and any number of other "autoimmune" diseases, then why not MG? At a recent international autoimmunity conference, one speaker said that all autoimmunity is infection driven.
Posts: 8430 | From Not available | Registered: Oct 2000
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lyme in Putnam
Frequent Contributor (1K+ posts)
Member # 11561
posted
Can't help but wonder y this happens, one on top of another. Im sorry for one complication after another. Hope somehow things get easier.
-------------------- He took u to it, He'll you through Posts: 2837 | From NE. | Registered: Apr 2007
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Tracy9
Frequent Contributor (1K+ posts)
Member # 7521
posted
My skin doesn't look out, and I do have my ferritin levels checked regularly because they have been low, but I supplement with iron and they are normal now and have been for about a year.
All autoimmune diseases can be caused by a bacterial infection. Small fiber neuropathy, which I have (diagnosed by biopsy) is known to be caused by Lyme and Bartonella.
MG can be caused by a bacterial infection, and we all have plenty of those.
It's not the autoimmune part that makes me certain of the diagnosis, it is the testing and it's accuracy. Here is the test I had which I tested positive on:
"Acetylcholine Receptor Antibody -- A blood test for the abnormal antibodies can be performed to see if they are present. Acetylcholine Receptor Antibody testing - Approximately 85% of MG patients have this antibody and, when detected, is a guaranteed diagnosis."
The acetylcholine receptors are related to the muscle weakness. This is a very serious diagnosis because people go into respitory failure due to the weakness in the breathing muscles. It must be very carefully monitored.
13 years Lyme & Co.; Small Fiber Neuropathy; Myasthenia Gravis, Adrenal Insufficiency. On chemo for 2 1/2 years as experimental treatment for MG. Posts: 4480 | From Northeastern Connecticut | Registered: Jun 2005
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