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Old 02-18-2011, 02:13 AM #5
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
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Hi,

I am positive for the blink test, the ice pack test - which is only positive on people with MG generated ptosis.Several studies in medical journals have proved the ice pack test is only positive in MG and not other diseases that cause Ptosis, like diabetes or horners syndrome.As it cools the neuro muscular junction.

But apparently they dont count. Its crazy as in countries where they can't afford to do the blood tests a postive ice pack test is the only diagnostic test they use.

I am also postive on the rest test - when you have ptosis lie down for 30 mins with eyes closed in a quiet environment and the ptosis resolves.

I also pass the upward gaze test - look up and I get bilateral ptosis, unilateral if I am lucky.

I have mild ptosis most of the time with both eye lids. My eybrows arch constantly so I look permenantly surprised. I will have that look on my face when a neurologist finally admits I have MG and treats me for it! LOL

But I have no anti bodies and no positive sfemg, despite the fact a neuro opthalmic examination will get the response that I have MG. Until the bloods are done again.

At present I am more and more convinced I have occular MG, not generalised. Occular MG has a higher rate seronegative and a high incidence of normal sfemg's. I think my weakness elsewhere in my body is being caused by postural orthostatic tachycardia and hypermobility syndrome.

Thank you for posting this.

Unfortunately I like Annie can already feel the hostility coming from other neurologists. They seem so set in their ways that you can only have MG if you have a postive blood test and positive SFEMG. Until they open their minds neurologists will just ignore this until it fits with their world view.

I have brought this up with so many neuro's even in the UK's centre of excellence with one of the worlds leading experts on MG.

Its great that you have posted it though as those without a diagnosis will have yet more proof for themselves that
a) they aren't crazy
B) they dont have somotization disorder
c) they dont have conversion disorder
d) That they are right to believe in themselves and fight for the answers.


I'm sorry if I have come across as old and cynical. This information is great for people who are just starting on their journey to get a diagnosis.

So I am really sorry if I have come across as dismissive as that's not the way I want it to appear.

Rach
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