Re: Re: spinal cord saroidosis and question for Moderator Kim

[Guest guest]

Hi all,

I actually do not know where my sarcoid started after my pulmonary sarcoid was dx'ed in 2000. I know I developed Spinal Cord Sarcoid when I actually injured my spine 2 years later. Once injured, my T-helper cells (I think that is whay they are called?) ... came in to try and fix the injury. Obviously, with my overactive immune system, the so-called helper cells tried much to hard. I now have lots and lots of "spurs", i.e., lesions, on my lower spine. Then, once I became unable to walk after 6 steroid injections, many months of therapy, pain scripts, etc., I had to go on medical leave. After finding a "specialist" in immune diseases at the Jefferson University Hospital in Phila, PA, I was sent for a brain MRI ... the radioligist's report read to be "several strokes and many lesions on the brain". I was absolutely devastated, feeling like "Fred Sanford" ... just waiting for "the big one". Then, my neurologist, who cannot make a decision on his own ... fortunately ... sent me to one of the coutries' most advanced stroke centers that is actually one of the two largest cities near my small island, the University of Pennsylvania ... the neuro there looked at the films and said, "you've only had one stroke and we have no idea when this occurred ... it could have been a couple of years ago or when you were 5." I never thought I would be so ecstatic to receive the news that "I've had a stroke"!!! Today, I was supposed to have another brain MRI and a neck and brain MRA, however, someone got a code wrong somewhere, and they had to cancel. This new dr. also was sending me for some intense bloodwork, including genetic testing. Also sent me for a heart ultrascould (I think that is what it was). After I get the brain MRI and MRA's, I'll see the dr. again to see what these tests show.

My depression is so bad now that I don't know what to do. Something is wrong somewhere with something ... I need to see a gyn to have some hormone testing, but I just can't seem to pick up the phone and dial. My LTD ins. co. is giving me problems again, and I might lose my disability in October. My dad also is in the middle of a scare which is weighing on me heavily.

Ruth,

I'm so sorry you don't have any truly qualified dr.'s ... I will pray you find one somewhere very soon.

Okay, I've gone on way too long, as usual.

Tracie,

As always I've missed reading your posts ... I read several each time I log on which is not very often any more. I miss chatting w/you as well ...

Kim, I'm not getting any of your e-mails ... I haven't received one since I wrote you privately. II know you've sent some because I've read Tracie's responses to you. Did you change your name again? I miss you terribly!!! I am just sick over these shingles ... why can't our prayers for you be answered ... I just don't understand ...

I love you my dear friend...

Joan

Darlene and Ruth, I have sarcoidosis in my spine, not my brain that's why I can't walk but just a few steps any longer, and have huge amount of pain when I try to walk, If I can be of help please let me know. It's still considered Neurosarcoidosis because the spinal cord is still considered part of the Central Nervous System, just as the brain is. I do have some forgetfulness, but mainly my gait is affected, I fall all the time as my legs just quit, and I have horrible pain in my neck and lower back as if they are getting ready to snap.

Hope this little bit helps,

-- Re: spinal cord saroidosis

Hi Ruth,

I am forwarding your message to our group in hopes that someone on our

list of nearly 400 will know more about spinal cord sarcoidosis......I have a lot of

back trouble but have not been diagnosed with sarc there............yet...........

We welcome you to the group but are sorry you have to have this awful

disease. We are a good group and have nearly 400 members as I have said.

Most are very good about sharing their knowledge about sarc. Please post to

the list and feel free to ask questions.................

neurosarcoidosis

Also, we have archives you can check through and find lots of info there.

Again, welcome.............and hope you can find what you need here.

Hugs,

Darlene

NS Co-Owner/Moderator

spinal cord saroidosis

Hello there. I have spinal cord sarcoidosis, which has paralysed me at T-4. This happened in 1994. When I first got my computer I looked up as much as I could about this disease, but I have not been involved for years, mainly because I could not find anyone else with my particular problem. Could you please tell me if there is anyone with spinal cord sarcoid. as the only site affected. I am a New Zealander, and know I am the only one in this country. Regards, Ruth