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Old 11-07-2009, 04:59 AM
rach73 rach73 is offline
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Join Date: Apr 2009
Location: Devon, United Kingdom
Posts: 531
15 yr Member
rach73 rach73 is offline
Member
 
Join Date: Apr 2009
Location: Devon, United Kingdom
Posts: 531
15 yr Member
Default Hi Ally

I pretty much feel like you. If I dont get a jitter or enough jitter on this test, Im afraid they will label me as a basket case, without a shrink ever being consulted!

I know you can have negative SFEMG and have MG. I know you can have negative blood tests and have MG. What annoys me is that most of the neuros I have to deal with dont understand that.

I respond to the ice pack test ( apply ice to the eye affected with ptosis and it opens). I respond to mestinon (although my gp reckons thats never been proved, well try I have ptosis and can barely move without it!). I respond to the rest test ( when you have ptosis rest in a quiet dark room for 30 mins and see if the ptosis resolves).

I febuary this year I met a lovely lady Dr from Iraq, who believed I had MG, because of the fact I responded to the ice pack test and the rest test and my response to mestinon. She explained in Iraq Drs didn't have much access to expensive tests and would go on ice pack tests and response to medication to diagnose the condition. However when I heard her explaining this to her consultant (she was retraining as she hadn't trained in the UK) he basically laughed her off the ward and told her we aren't in the third world now. The lady Dr was crest fallen. I never saw her again.

I have had the diagnosis of MG (due to my response to neostigmine) and then that was removed. I have been told I have Chronic fatigue syndrome. I have been told its stress and all in my head.

Obviously the CFS diagnosis and the stress diagnosis are affecting the way Im being treated by the medical staff I come into contact with. I feel like Im being treated like a "frequent flyer" (some one who seeks attention by claiming to be sick when there is nothing wrong with them). By getting a positive SFEMG it would end all of that. So like you Ally, this is very important to me. I worry that without a positive test they will then suggest taking me off the mestinon and then who knows what will happen?

Its a scary place to be.

Love
Rach
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"Thanks for this!" says:
DesertFlower (11-07-2009)