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Old 12-05-2009, 11:31 AM #1
suev suev is offline
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Join Date: Jun 2009
Location: Texas
Posts: 748
15 yr Member
suev suev is offline
Member
 
Join Date: Jun 2009
Location: Texas
Posts: 748
15 yr Member
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Ditto to what Annie said. I repeat the suggestion about a complete workup in Dallas (or anywhere new). Also, I wonder about drug induced vasculitis. There are others who know much more about it than me and will, hopefully, weigh in.

Erin, you had said a couple of days ago that you thought your MG was doing good - but it was the other stuff (reaction from pex and the left leg pain) that was putting you in a Job-esque scenario. The last time you had IVIG, they did the pex within a couple of weeks (cancelling out the IVIG) to help the pain. So I'm thinking that the IVIG isn't likely to help the pain now.

Erin, immunologically, your body has been through more in the last 12 months than 1,000 folks go through in a lifetime. They have thrown so many things at you - one on top of another - in an extremely short period of time - that your body may well have no sense of up, down, left or right.... so it's just freaking out!! And its way of telling you is Pain.

It has got to be difficult for anyone to determine what drug is effecting what body response in you. That's why I think it would be extremely beneficial to begin again with a new medical team who has no past bias about what has/hasn't worked.

One last thought...Are you still on Cyclosporine? Have you looked into that as a cause/contributor? If I remember the sequence, you didn't have pain until shortly after the Imuran was stopped and that drug was begun.

I am truly sorry for what you are (and have been) going through. It's not fair and you have to be fed-up and exhausted. To add insult to injury, the Holidays are coming. All we can do is offer support and our ideas - which doesn't seem like much when you need so much more help.

You will find the best way to get through this - because you are you. But please do give serious thought to a new game plan.

Sue

Last edited by suev; 12-05-2009 at 11:41 AM. Reason: typo
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