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Member
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Join Date: Apr 2009
Location: Devon, United Kingdom
Posts: 531
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Member
Join Date: Apr 2009
Location: Devon, United Kingdom
Posts: 531
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Thanks Annie.
I do miss this forum but I feel like a fraud having gone 5 years with and without an MG diagnosis!
MG is still raised by every doctor I see other than neurologists. I still can't look up without getting bilateral ptosis, My ptosis still resolves when I do the ice pack test. I still can't stand on tip toe and then stand on my heels. But I have a negative blood test and negative tensilon tests.
I am now on midodrine for my postural orthostatic tachycardia syndrome - which helps with my ptosis but the only thing that really gets rid of it is mestinon......if only I could tolerate it!
I think that part of my illness will always be a medical mystery!
Rach xx
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Diagnosed with:
Postural Orthostatic Tachycardia Syndrome,Post Prandial Hypotension, Orthostatic Intolerance, Arrythmia, unstable blood pressure, severe autonomic nervous system dysfunction ,Ehlers Danlos Syndrome Type 3,Gastroparesis,IBS,Hidradenitis supprativa
And Myasthenia is still a possible diagnosis depending on which Dr I see.
My blog address is
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Lord, grant me the serenity to acceptThe things I cannot change,The courage to change The things I can,
And the wisdom to hideThe bodies of Doctors I shot
When they said,"You're perfectly healthy,
It's All In Your Head."
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