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Unread 09-16-2012, 04:48 PM   #1
Alan53
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ive had myasthenia gravis for 4 years but i don,t fit in to any group i,m negative in anti bodies ive had a test by my neuro who doesnt think i have M.G. my new Dr has done blood test and found i have parathryiod a raise level of cacium in my blood and many side effects but mayb the calcium is helping me in some way as i manage my M.G quite well
i,m such a odd ball and no one thinks i even have it as i seem quite strong my symtoms are muscle weakness arms and legs a feeling of exhaustion breathing problems but only in the early evenings speach probs i,m quite strong in the mornings and early afternoons what hurts is no one thinks i,m realy poorly
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Unread 09-16-2012, 05:04 PM   #2
Alan53
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ive had myasthenia for 4 years and this site helped me so much then i left as i seam different to every one else thou for the last year ive had a horid time with not been able to get any suport from my neuro or Dr thou that changed in jan i got a new Dr who was willing to start from the begining and test for any other things that may also be with me and they found that i have parathroid raised calcium in my blood but i,m thinking that that mayb helping me cope with my myasthenia time will tell i supose just glad that i,m not suffering from any brain disarder as my M.G suport group have lots who also have the same problem when the body becomes weak so glad to have found that out as its bean a nightmare !!!!!
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Unread 09-17-2012, 05:53 AM   #3
StephC
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Welcome ...this group has been I an invaluable resource for me and I hope it helps you as much! The members are welcoming, kind, insightful and intelligent people.

Stephanie
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Unread 09-21-2012, 08:39 AM   #4
Anacrusis
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[quote=Alan53;914955 what hurts is no one thinks i,m realy poorly[/QUOTE]

Hello

This one is for you Alan….

Although this letter is not about MG, it describes perfectly how lonely and misunderstood people can feel with an unwanted health condition. I think the writer did a great job for herself and most likely a few others by putting down her thoughts......

http://neurotalk.psychcentral.com/sh...letter+normals

Good luck!

A.
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"Thanks for this!" says:
Alan53 (09-24-2012)
Unread 09-23-2012, 11:02 PM   #5
AnnieB3
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Alan, Have you had other basic tests done like a B12 level, thyroid, Vitamin D, celiac disease panel or other tests done recently?

With a parathyroid level off, you really need to see an endocrinologist. A neurologist isn't the right doctor for that. They can also check other things, like the above tests.

So often, people have more than MG going on. It's good to check out other things when your symptoms are worse. A B12 deficiency can cause dementia if it goes for too long undiagnosed. It can also cause white matter lesions in the brain. So please, have some more tests done!

Also, if you or someone else can take photos or a video of when your are worse, that might help your neurologist.

No one deserves to be in such medical limbo.

Annie
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Alan53 (09-24-2012)
Unread 09-24-2012, 01:06 AM   #6
Alan53
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Annie yes I,m under another specialist for my parathyroid and I,m going to be having a scan on my neck and have had many blood tests to see if anything showed which is how my raised calcium was found I am no longer on steroids or any drugs at all for my M.G have also been going to a Gym for 15months which has helped greatly I can understand my Neuro not believing that I have the symptoms
I do a video dairy every few months only of positive things.
Thanks Alan
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