Help finding Dr needed and advise please

July 28, 2009

Hi All,

I am at a crossroads right now. I was told I have neurosarcoidosis back in 1994

and at that time I had applied for Social Security Disability and was rejected.

I did manage to find a job and was able to work from home for the first company

for 8 years and then found a second company that would allow me to work from

home and worked for them for 7 years. I moved from LI,NY after the first 2 years

to the coast of NC and still worked for them. I was laid off on March 20th of

this year and I am collecting unemployment. I have spent the last 4 1/2 months

desperately trying to find a legitimate work from home position with a real

company that pays real money to no avail. There are a lot of scams out there.

Anyway to make a long story a bit shorter, I need a Dr in the ville NC

area that KNOWS what Neurosarcoidosis is- NOT sarcoidosis. I have severe

headaches, balance problems issues with my eyes, ears, liver and kidneys and

cardiac issues. My lungs are FINE. The last time it was checked about five and a

half years ago when I lived in NY my ACE level was 94. I have not been able to

find a Dr on the coast of NC that has ever heard of Neurosarcoidosis and they

wont go by results of tests done back in 1994. My insurance is Blue Cross Blue

Shield of VT on COBRA which they accept here but the coverage is not very good.

I already owe hundreds of dollars just for an upper respitory infection I had

back in May. I dont know what to do. The employment security commission of NC

has approved to pay for me to go to college for two years and I am supposed to

start classes on August 17th, but honestly I cant imagine being able to stay

healthy enough to do this for two years. I have virtually no immune system and I

get sick just going to Walmart. In addition to that If I am unemployed for two

years my disability payment would be greatly reduced. Again I have not applied

after being turned down in 1994, but I know that they go by the overall income

for a period of time and with me making so much less on unemployment for the

last five months I am already in trouble. Can anyone advise what I can/should

do? I really am scared to try to go to school and I haven't been able to find

one single Dr in this area that has heard of this disease. I am not in a

position to go to Duke or any other hospital in the western part of the state. I

cant afford the hospital bills and am just trying at this point not to lose my

house. The only medication I take is fiorcet for the migraines and OTC acid

reducer for my stomach. I cant afford to be on meds for this. Sorry this is so

long but I really need HELP!! Irene from coastal NC

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