Re: New to the Group

[Guest guest]

Little Ron, not to be confused with "Oyster man-- Ron",

Welcome to family. I so wish none of us was here.

So- what to ask the doc--

He'll probably want to put you on prednisone and taper you off over an extended period. It might help, but with NS-- it's important to ask about alternatives to steroids.

He may know about using Methotrexate, Plaquenil and other immunosupressive drugs that are steroid sparing.

It's important that you start with the least offensive and go up the chain of meds-- so they all want to use prednisone.

I hope he'll get together with the neurologist and make a team decision-- that is work together with your other docs.

Do you have any sign of sarc in the lungs -- or is it just in the brain. (Just- isn't really a good choice here..) How is your vision? Do you have systemic arthritis issues?

All of these can be significant that the sarcoidosis is in more than one body system. One of the newer studies is showng that for those of us that started on prednisone and were weaned off, that if the sarc comes back that it comes back with a more progressive attack than if we weren't on pred. I know I poste it in the Message ARCHIVES -- you can go to the group site, to messages and search by Prednisone and sarcoidosis. You can also search by "talking to the doctor" and should get some questions to ask.

There is a wealth of info there-- and you are welcome to print out any of the articles and take them with you.

FSR--Foundation for Sarcoidosis Research has a great brochure on Neurosarcoidosis-- you may be able to print it out also. That site is www.stopsarcoidosis.org. The other site I highly recommend is www.sarcoidosissharma.com. Dr. Sharma is at USC-LA and is the #2 world specialist on sarcoidosis. He is a great man-- and knows this disease better than anyone. I was part of a clinical study that he headed up on Remicade (Inflixamab and pulmonary and ocular sarcoidosis.)

I'll try to find one of the articles on talking with the doctors-- and get more info to you. It may be tomorrow, as I've managed to come down with a nasty case of bronchitis and am wiped out tonight. Right now all of the moderators and owners are sick also-- so please be patient- we will get back to you.

I know this is urgent since your appt is Wed.

Again, ask questions, and we'll help where we can.

Sincerely,

Tracie

NS Co-owner/moderator

To: Neurosarcoidosis Sent: Monday, December 1, 2008 4:43:29 AMSubject: New to the group

I am new to the group and I could use a little help. I am a 60 year old man who has been diagnosed with neurosarcoidosis by my Neuro doctor after a spinal tap. I have an appointment with a rhumotolgist( excuse my spelling) on Dec 3rd. What I would like to know is what do I ask the doctor?

My main sympton that started my journey throught this is lightheadness which often comes on at work. A catscan from my regular doctor showed nothing . A MRI ordered by a ENT specialist showed a thickening around the brain which then sent me to a Neuro doctor who did the spinal tap and diagnosed the NS and wants me to see the next doctor.

Not knowing anything about this is causing some apprenhension so any help in the next couple of days will be appreciate.

I have seen at least one Ron here so you can refer to me as "little r". That comes from the verse He must increase and I must decrease.

little r

ron rawlings