Re: Introduction -

[Guest guest]

Hi ,

I do hope you can get your son to join in the group also. The both of you will find that by learning all you can about this disease you will be so much more empowered to deal with all that comes with it.

There are several members of the group where sarcoidosis has run in families. Although my mom has not been diagnosed, I suspect she has it also. The statistics show that it is more prevalent in siblings than in parents to kids.

In our ARCHIVES and LINKS-- I'll post the address again, you will find a tremendous amount of info on NS and systemic sarcoidosis. We are over 500 members strong, and have a wealth of information to share.

I apologize that I'm not able to do more today, I just got home from my Remicade infusion and have some serious chemo brain fog going on-- so will probably be sleeping the next 2 days away.

I know that other members and moderators will answer your email soon--- give us a day or so-- we are all dealing with this disease also.

WElcome to the family,

Sincerely,

Tracie

NS Co-owner/moderator

Introduction -

Hi all...Thought I would take a moment to introduce myself and tell my story.I'm 65, live in Texas, and on Social Security Disability since2003....not for sarcoid, but for osteoarthritis in knees and back. I'm currently in Stage 4 Chronic Kidney Disease and suffer from lowred blood cells and low iron. Current treatment is Aranesp injectionsonce a month and just starting another series of IV Iron Infusions forthe next 5 weeks. In 1970 I was diagnosed with Boeck Sarcoid,involving the thoracic lymph nodes. Many of the lymph nodes wereremoved. For about 2 years I was off and on steroid treatment toreduce joint inflammation. ...my only major symptom. After about 2years the symptoms totally disappeared and other than a smallgranuloma in my right lung I've had no further major attacks.Now...the real reason I came to this group. I have a 44 year old son.Last May my son was experiencing severe

headaches and loss of memory.He was admitted to the hospital with the thought he might havemeningitis. After 26 days, biopsy of the chest lymph nodes, he wasdiagnosed with Neurosarcoidosis. When he left the hospital he was onsteroids which were increased over several weeks....he immediatelygained about 45 pounds! He was actually finding relief from theheadaches and was doing better with the memory. He went back to workfor about 2 weeks, but couldn't keep up so was placed on short-termdisability again. About 3-4 weeks ago, after being weaned off thesteroids, the doctor switched him to Azathioprine. As they increasedthe dosage, his headaches came back and he started falling. LastThursday they admitted him back into the hospital for more tests.I know how frustrating this disease can be, but I'm new at dealingwith the Neuro version. I hope you can help me understand more aboutthis disease and by

doing so I can help my son. Right now he's reallyscared and frustrated with his condition. He's always been aworkaholic.. ..he's a technician for the local Mercedes dealership here.Have others of you experienced this disease for multiple members ofyour family?Thanks for any help or encouragement you can give.Hugs,