Tested for IGG4....negative...next..RA and Wegener's
 

It has been awhile since I have been here. Since I have IHCP (Idiopathic Hypertrophic Cranial Pachymeningitis) at this time from my pathology report taken with the removal of my brain tumor...I now have to be tested for many other immune diseases. (I already have Celiac Disease.)

The next immune tests are scheduled for May. Each time I also have a new MRI with gadolinium to assess the dura of my brain. So, the wait is important.

In the meantime, I have been feeling ok. No more epileptic seizures, and am still on the generic of Keppra. I did have one episode of amnesia, which lasted for about an hour last month, but none since then, and the Dr. is not that concerned.

I have a speech pathologist who is helping me with my aphasia and lists me at 80% in my speech and word finding. Not sure if I will ever be 100% but sure beats the alternative of not speaking at all.

Hoping to get this diagnosis project completed...but I know it takes time.
:)

Hi Joan.
I read your story. You have been through sooo much!. I wish you all the best and have good strenght going foreward with your further tests. I hope your further autoimmune testing all come back negative.
From here on, it is only forewards. I think you have had your good share of troubles.
How many different autoimmune diseases do you need to get tested for?

It is good you have a good clinic.

I have vasculitis, annd have routinely also had blood tests for Wegeners. ( and we do not want to have that one!!!)

You brobably have gotten a lot of literature regarding signd and symptoms to look out for.
I wish you the best
Synnove