Myasthenia Gravis For support and discussions on Myasthenia Gravis, Congenital Myasthenic Syndromes and LEMS.


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Old 04-07-2013, 01:10 PM #11
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PS:Cait24 I loved your comment about getting your teenage daughter to help. Lol! I am glad I am not the only one. My daughter will do nothing to help me. It makes me feel so bad.
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Had MVA in 2006 resulting in post concussive syndrome manifested by cognitive impairment, chronic pain/ fatigue. Chronic pain of head, neck, back, left leg.
Other problems include REM sleep behavior disorder, nocturnal frontal lobe epilepsy, chronic migraines associated with nausea/vertigo, episodes of passing out, hypoglycemia, liver dysfunction (had accidental overdose of acetaminophen in 2009) had liver and kidney failure, hernia, degenerative disc disease with compression of nerve root, PTSD, and other problems associated with functioning problems from traumatic brain injury (light, sound sensitive, easily overloaded, easily distracted, cannot focus, anxiety problems etc.)
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Old 04-07-2013, 03:03 PM #12
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Oh Hello Brandnu!

Well I have lately been reflecting on the interesting process of being diagnosed with CFS a few years ago. I had to fill out a badly photocopied questionnaire and ended up having to take it home because I needed too many rests in between whilst filling it out at the docīs office. Three doctors concurred on the diagnosis – 2 without ever having seen me and the third one without any interest at all in observing my muscle weakness. I was offered CBT, which I refused.

Somehow you just know retraining your brain is not going to cut it when dealing with the detrimental effects of heat and prolonged use of muscles away from the body whilst trying to do a ridiculously impossible task like washing your hair in a shower!!!!

The elbows against the shower window helped me the most - also elbows resting into stomach for washing the face. A stool in the shower is good but using an ordinary shower head (non water saving), and as low down as possible helps even more since the extra force of the water may save on muscle exertion - which all may help you for the time being.

Good Luck with tests,

Anacrusis

Last edited by Anacrusis; 04-08-2013 at 02:50 AM.
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Old 04-07-2013, 07:28 PM #13
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Quote:
Originally Posted by Brain patch View Post
How do they test for this problem?
Brain
I like the mayo clinic summary of MG, here is the link. It explains the symptoms and treatments at a very high level. Most of us here were diagnosed by antibody tests or single fiber EMG.

Here is another good resource page: http://www.myasthenia.org.au/html/background.htm.

Good luck
kathie
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