Re: Help finding Dr needed and advise please

[Guest guest]

Irene please try your disability again. Things have drastically changed in the past year where social security and sarcoidosis is concerned. They do have a little better understanding than they used too. I am a social security adjudicator.

Some of the things you will really need to address when filling out your paperwork is the type of work you have done in the last couple of years. You have to really address how the sarcoid affects your in doing the job. Does it make your forgetful, how often you are out of commission because of the symptoms or side effects of medications, be brutally honest about how much it is changing and limiting your regular daily function. Example if you have short term memory loss, or especially if you can no longer maintain a 40 hr work week. If you are over 55 years of age this is a plus also. When you turn in the paperwork they will send you (adult ADL's), be brutally honest about what the illness is doing to you, how often you have to go to the doctor, how it is changing what was your normal life and routine. Remember when you are filling out paperwork for us, you have to paint me a picture of what is

happening to you personally; so I can see in your descriptions what is happening to you. Let me know both physically and mentally what is happening. Medical records are good and carry alot of weight, but doctors dont' usually go into great detail about what is happening to the person all around. One illness can affect 10 different people, 10 different ways.

Everyone will tell you we deny the first time always, this is not true...

Everyone will tell you, you need a lawyer, this is not true; I don't pay them any attention and alot of times do not hear from them, yet they collect a percentage of the person's disability payment. They have no bearing on the decision I make, and do not sway me one way or the other.

Right now the focus is more toward allowance, so it is a good time to apply

I am sorry that when you first applied in 1994, we didn't have a clue, plus you were much younger and that makes it very difficult, sedentary work does too; that's why you have to explain in so much detail the effect of the illness.

Hope I haven't gotten all in your Koolaid, hope the information might help...Connie-FL

Subject: Re: Help finding Dr needed and advise pleaseTo: Neurosarcoidosis Date: Tuesday, July 28, 2009, 3:11 PM

Irene, Alot of colleges have many classes online so that you don't have to compromise your health. The other issue iss that you may be ableto find a clinis or health care organization local to you that take people without innsurance on a sliding scale. You may be able to find them through your locaal hospital,or social services in the phone book. I know we haave them aaround here. Good luck! Bonnie B

Help finding Dr needed and advise please

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 f ive 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

[Guest guest]

I agree with Connie. It took my persistence to get the disability for but we managed to get it done without lawyers etc. I began the process online and then copied all the info to a word document so that each time someone called regarding what we had filed I gave the exact same info. It also took us keeping on top of doctors and previous employers to fill out necessary paperwork. Yes it was a real pain in the rear but we were eventually successful. Hope this helps. Feel better.

From: quiltenbe (AT) aol (DOT) com <quiltenbe (AT) aol (DOT) com>Subject: Re: Help finding Dr needed and advise pleaseTo: Neurosarcoidosis@ yahoogroups. comDate: Tuesday, July 28, 2009, 3:11 PM

Irene, Alot of colleges have many classes online so that you don't have to compromise your health. The other issue iss that you may be ableto find a clinis or health care organization local to you that take people without innsurance on a sliding scale. You may be able to find them through your locaal hospital,or social services in the phone book. I know we haave them aaround here. Good luck! Bonnie B

Help finding Dr needed and advise please

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 f ive 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