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Old 09-21-2009, 06:41 AM #6
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erinhermes erinhermes is offline
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Join Date: Jul 2008
Location: San Antonio
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15 yr Member
erinhermes erinhermes is offline
Senior Member
erinhermes's Avatar
 
Join Date: Jul 2008
Location: San Antonio
Posts: 1,471
15 yr Member
Teeth Thanks Annie!

Hey Annie! THanks for the advise!

I am on 1800 mgs of Calcium w/1200 IU of Vitamin D - or 300% of the daily rec amount right now. My hemo/onc started me on these as soon as I started on the Pred. I am also on prenatal vitamins - my internist felt they were needed b/c as you said, pred can rob the body of stuff.

I start PT on Wed and cannot wait! My docs know something is wrong but they just can't pinpoint it yet! It is so frustrating hurting like this!
I had a GREAT time in NY but was wheel chair bound - not due to weakness but to PAIN!

Again, thanks!

Big hugs!
Erin




Quote:
Originally Posted by AnnieB3 View Post
Erin, I'm sorry you are having pain. I will again say that physical therapy, done not at home but by professionals, is something you should try. They should be recommended by your neuro because all physical therapists don't know about MG/neuromuscular diseases.

No, fibro has not been proven to be autoimmune. They do not know what causes it though there are lots of guesses out there. Leave the diagnosing up to the doctors. Having said that, there aren't a lot of fibro experts. Some rheumatologists are.

You have a lot going on and are on a lot of drugs. I may be smarter than a gnat but I am not smarter than doctors. I simply can't advise you on anything. A doctor needs to take it all into consideration and figure it out.

I will again ask, how much vitamin D are you taking? A deficiency in that will cause widespread musculoskeletal pain. Pred might keep you from absorbing nutrients.

I've never had plasma or IVIG, so I can't help you there.

I don't know what else to tell you. Maybe a primary doctor can help you ferret all this out.

Annie
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