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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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Thank you Kathie,
I am affected greatly by the heat. Its makes my postural orthostatic tachycardia worse and makes me prone to fainting. It also makes me feel very weak and breathless.
I have tinnitus also, partly due to the fact I've got glue ear at the moment (fluid behind my ear drum). I had tinnitus before this but its made it much worse.
My gp said he believes the problems with my sight are a muscle and nerve issue.
I think they (all my drs) are freaking out because basically from 2010 they all said no it wasn't MG. The fact that mestinon actually makes me feel alive and resolves my ptosis was put down to the fact it increases my blood pressure and my ptosis must be being caused by that, as all tests as far as they were concerned were negative for MG.
My symptoms now are 100 times worse! At least they rushed through a neuro opthalmologist appointment for me.
Thanks again Kathie
Rach x
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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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