Re: ?neurosarcoid, definite pulm and liver sarcoid, may 20...

[Guest guest]

Sounds like vasculitis and TIA. Transient Ischemic Attack. You wouldn't have any blood clots show up on MRI-- as it dissolves on its own- so no sign- just left over injury .

Here is a site address for Epilepsy Associates, on how sarc can effect the brain.

http://professionals.epilepsy.com/page/inflammatory_sardcoidosis.html

The Foundation for Sarcoidosis Research, at www.stopsarcoidosis.org has some great info also, as do our LINKS and ARCHIVES-- that you can print out and give to your MD's-- block the door with your chair and make them go over this stuff with you-- take someone else with you, so that you have 2 brains instead of one working to understand what is going on. You need someone to listen and take care of you.

Sincerely,

Tracie

NS Co-owner/moderator************************************** See what's free at http://www.aol.com.

[Guest guest]

Hello tracy,

I'm hoping this reply from you is from my letter

online. If so thank you very much for replying.

this is quite a feat to diagnose, over 3 years and

still just bits and pieces, ucsd diagnosed me with

anaphyllatic vasculitis, nobodys ever heard of that.

but i think from research the vasculitis part fits in

nicely, and your info on tia helps in understanding,

but now its how do i get the docs to agree and put

together my case story. I went to a forensic

neurophsycologist and did some extreme plus testing

both written and physical. He was excellent, the same

type of graph came up showing " conversion disorder " ,

but, he went furhter to explain the curve and come to

find out all tests that pertain to the left side

function are impaired. one good positive result to

show something. and this neurologist i see now only

the past few weeks wants to work with me outside the

normal neuro box and see what things really are and

not push me away, like all the others. we'll see what

happens.

thanks again for all your infor and help

Ken-ostrichlegs_2000@...

--- tiodaat@... wrote:

> Sounds like vasculitis and TIA. Transient Ischemic

> Attack. You wouldn't

> have any blood clots show up on MRI-- as it

> dissolves on its own- so no sign-

> just left over injury .

> Here is a site address for Epilepsy Associates, on

> how sarc can effect the

> brain.

>

http://professionals.epilepsy.com/page/inflammatory_sardcoidosis.html

>

> The Foundation for Sarcoidosis Research, at

> www.stopsarcoidosis.org has some

> great info also, as do our LINKS and ARCHIVES-- that

> you can print out and

> give to your MD's-- block the door with your chair

> and make them go over this

> stuff with you-- take someone else with you, so that

> you have 2 brains instead of

> one working to understand what is going on. You

> need someone to listen and

> take care of you.

>

> Sincerely,

> Tracie

> NS Co-owner/moderator

>

>

> **************************************

> See what's free

> at http://www.aol.com.

>