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Quote:

Originally Posted by cyclelops (Post 636811)

I think they either need to increase the frequency of IVIG, or add something like Cellcept. I am tooooo scared of Rituxan and I read the results are not that great with Rituxan.

An afterthought Cyclelops,

I know that doctors have huge ego's, but perhaps you could somehow tell them that you would like to try the Cellcept... You may know best - it is after all your health and body...Perhaps, you instinct is correct.

Mere

My docs are pretty reasonable. My neuro really tries to accomodate me. If I do decide I want to try the Cellcept, it will be a small dose and with the IVIG. It is a matter of telling him I feel I need more. He will contact me next week. I will see what they say. I see my rheumie and and my neuro in May, as well.

I hope they decide to do the autonomic battery for you too....

And as far as autoimmune disease being specific, I think there are lots of people that have overlap disease, which is essentially what I have. Even my muscle biopsy has a lot of what some one with polymyositis has....my CRP bounces, my RNP antibodies are just slightly under the cut off, my C4 is low like in lupus, my salivary gland is Sjogrens, and my ANA is scleroderma-ish....how it THAT for mixed connective tissue disease, LOL. Tah Dah....

Plus, I think one can have both hereditary PN and autoimmune issues if one is has crummy luck.

It is what it is.....It is Cyclelop's Syndrome. Main symptom is the patient becomes insanely prone to humor.

So Mere, keep us posted on what they are going to do.

Thanks cyclelops...
We will see what he does. He was unsure of how to proceed until he reviews my history...

You have a lot of positive serology. Definitely something hard and sure going on.

"Main symptom is the patient becomes insanely prone to humor".

It helps us all, cyclelops. Please keep on, you do have a great sense of humor that comes through in your writing.

Mere

Given the ANA is that high, I sure would sleep better if I knew which autoantibody was chewing on which portion of my nuclear DNA.:Scratch-Head: It is kinda like having roaches in your kitchen, and not being able to catch them when you turn the lights on.....or termites in your wall. You know they are there, you just can't erradicate them without poisoning yourself too.:eek:

With that image, I think I better :Zzzz:

:yikes: Get a shoe....get that bugger!!