Confused new member thanks you!

[Guest guest]

,

Thank you, your kind praise has made my day!

From your other email, it does sound like NS. Do you have sarc anywhere else-- lungs, eyes, arthritis or bone pain? Have they told you that you have fibromyalgia?

The reason I ask is so many of us have FM-- and chances are that the knots are sarcoidosis scarring of muscle--and they can also be biopsied.

I am not one that likes the idea of biopsying the brain for sarc-- what they can do is check spinal fluid via a spinal tap, MRI's CT's, nerve conduction studies- EMG's, and such-- and when they've ruled out Lupus, MS, brain tumors, all that stuff-- what ends up left over is NS.

There are no tests that specifically prove NS. One of the biggest challenges is that you can have normal test results-- and still have NS. The inflammation can be in the form of vasculitis (inflammation of the blood vessels) and when it's in the brain-- then it may not show up on any scan or blood test (ACE is the closest to show 'systemic- none specific inflammation) but because with inflammation you get swelling- the area that the blood vessel is putting pressure on- will be impaired. When you bring down the inflammation, that area that was being impaired, starts working again. So our subjective complaints can be very transient and illusive.

Neuropsych testing is one of the best--- as it checks all the areas of the brain for tasking ability. If you have short-term memory problems, it'll show up as you sit with the psychiatrist and repeat the story back that you've been told. They have you do puzzles, math, counting backwards, this kind of stuff that takes a particular part of the brain to be functioning, and when you can't do these- then they know there's a problem.

Do go to SARCOIDOSISSHARMA. hE'S one of the most specialized pulmonologists in sarcoidosis research-- and has the most incredible knowledge of this disease. So his article is most important to take with you to your MD's.

You said that your MD's are thinking of putting you on Remicade. I can tell you that it's helped me tremendously. It does require that you be on a second immunosupressant (and it formulated to work best with Methotrexate) because it is possible to develop antibodies against the remicade. so you need to be put on the MTX while you're going down on the Prednisone-- and then have them add Remicade.

Methotrexate takes about 6 wks to 3 months before you see improvement, but it can really help. Plaquenil is also effective in getting the systemic inflammation down.

I've written alot of info on Remicade treatment, and my experience = which you can find in the ARCHIVES. Just search by Remicade-- and you'll get a bunch of posts.

It's worked well for me, yet we've had other members that have had extreme reactions. It has it's risks- including a "simple" infections becoming extremely serious.

anyway, let us know how we can help- ask questions, none are too stupid-- (some of our answers may be--but hey, we're human) and know you've found a family that is going thru the same stuff you're going thru. We can be a crazy bunch, and joke and laugh- and cry with each other. And it's all good.

With compassion,

Tracie

NS co-owner/moderator

[Guest guest]

I just browsed the Links section and was overwhelmed with the great stuff there.

I don't know

how to thank you for being here! I have tried to find other groups with similar

situations and

medications but none were a very close match. This site is right on. The

information you are

providing may just give me some of my sanity back! Thank you, thank you...