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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 since

2003....not for sarcoid, but for osteoarthritis in knees and back.

I'm currently in Stage 4 Chronic Kidney Disease and suffer from low

red blood cells and low iron. Current treatment is Aranesp injections

once a month and just starting another series of IV Iron Infusions for

the next 5 weeks. In 1970 I was diagnosed with Boeck Sarcoid,

involving the thoracic lymph nodes. Many of the lymph nodes were

removed. For about 2 years I was off and on steroid treatment to

reduce joint inflammation....my only major symptom. After about 2

years the symptoms totally disappeared and other than a small

granuloma 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 have

meningitis. After 26 days, biopsy of the chest lymph nodes, he was

diagnosed with Neurosarcoidosis. When he left the hospital he was on

steroids which were increased over several weeks....he immediately

gained about 45 pounds! He was actually finding relief from the

headaches and was doing better with the memory. He went back to work

for about 2 weeks, but couldn't keep up so was placed on short-term

disability again. About 3-4 weeks ago, after being weaned off the

steroids, the doctor switched him to Azathioprine. As they increased

the dosage, his headaches came back and he started falling. Last

Thursday they admitted him back into the hospital for more tests.

I know how frustrating this disease can be, but I'm new at dealing

with the Neuro version. I hope you can help me understand more about

this disease and by doing so I can help my son. Right now he's really

scared and frustrated with his condition. He's always been a

workaholic....he's a technician for the local Mercedes dealership here.

Have others of you experienced this disease for multiple members of

your family?

Thanks for any help or encouragement you can give.


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