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Re: frustration!!!!!!

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Well with me my lymph nodes were enlarged in my chest wall so they did biopsies that was in 1990 not to mention the pain of the inflammation they didn't even mention anything about ACE levels then and since then my ACE levels have been somewhat ok but I have been on meds to keep it under control but I have had other problems like in 2004 I had pancreatitis that put me in the hospital and when they ran all sorts of tests the only conclusion they could come up with was that it was sarc related and put me on methotrexate then.

My neuro symptoms vary but my MRI's show white patches on my brain which is inflammation which I was told is neurosarc. My memory, some cognitive abilities are affected, I have peripheal neuropathy. So anyways I've been told that my sarc is systemic.

I hope that this helps.

I had a doc tell me not long ago that my sarc was ok because it was not active in my lungs..................NOT............I was in the hospital with farocious(SP?) headaches migraines and I had done all sorts of weird things that weekend and didn't remember doing them, the ER doc said it was typical of neurosarc progressing.............

I also have mini-seizures that I'm on meds for now too...........

I hope this you get some definative answers soon I know how it is to be in the dark.

Hugs, Jan

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