Re: Pulm Sarc Changes

[Guest guest]

I read, today, in our local paper of a women who passed

with "neurosarcoidosis". If you could-- please send us the name of the deceased. We have several members in Michigan with NS. Thank you.

Can any one share their thoughts? Should I be concered with my

husband's pulmonary sarcoid developing into something more?

I think to answer the question--is there something to worry about: I've have to ask-- does your husband have sarcoidosis only in his lungs? Has he had or have problems with his vision - iritis or uveitis? (Light sensitivity.) Does he have short term memory loss, or problems doing normal daily activities. IE. paying bills, not remembering where he parked the car, or why he made that trip to the hardware store. Does he have arthritis type pain in his joints and ligaments, or loss of strength in his extremities? Does he have numbness or pain in his hands and feet?

When sarcoidosis starts effecting more than one system-- treatment needs to be more agressive. Since his MD has him on both prednisone and MTX, and you feel he's doing well-- he's probably ok. If you notice that he starts having additional symptoms, then yes-- he needs to be re-evaluated.

There are several different meds that can be used to treat sarcoidosis, so when Prednisone is no longer helping, or he starts having side effects from it (thinning bones, blood sugar problems, mood swings) then it's time to wean off the Pred and try some of the other immunosuppressants.

Imuran, Plaquenil, Methotrexate-(MTX), Arava, Enbrel, Humira, Remicade, as well as others-- are all good when used in combination to slow the progression of sarcoidosis.

NS does not have any specific tests that say 100% you have NS. It's a diagnosis of elimination. When they've run the tests for MS, Lupus, Rheumatoid Arthritis, and all the other auto-immune diseases-- then maybe the MD will confirm the NS.

Neuropsych testing, along with CT's or MRI's that can show possible lesions or inflammation of the brain or vascular systems is helpful. It is possible to have NS and have all the tests come back negative.--However, if there are signs of NS-- the neuropathy, the problem solving skills, weakness in the extremities, then many times the neuropsych testing can show that there is a delay or dysfunction at different points of the brain. This is because the tests require specific parts of the brain to function to complete the task.

Check out our LINKS and ARCHIVES-- we have a wealth of information there-- and you are welcome to print it out and take it to your MD's and have them go over it with you.

Your husband is so very fortunate to have you willing to learn about this disease. We all thank you-- support from our loved ones is so very, very important.

Blessings to you,

Tracie

NS Co-owner/moderator