Lupus Forum - Lupus And the Va

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Q: Lupus And the Va

asked by: ellenoc on June 20th, 2004

New User

Hi,
i have lupus cerebritis. I have had it for about 20yrs now. When I was in interrogator in the service, it developed. I have been receiving compensation, meds and treatement for 18yrs from the va. I am currently receiving 100% as the va tested me and found that I had brain damage from lupus. In 9/01, the va doctor took me off my meds and made me change my rheumatologist. The rheumatologist he sent me to said I had auto immune phenomenom and a pyschiatric problem. The va said they wouldn't give me my meds until I proved to them I had lupus. Traveling makes me extremely sick, but I traveled 3 1/2 hrs away to a va rheumatologist who said there was no consistent evidence that I ever had cns lupus. In these 2 1/2 yrs my lab tests showed lupus, sjogrens and thydroiditis, but the va wouldn't even treat for pain. The va now is trying to say that I am inactive from depression and I can do things, but I just don't want to. I have two outside doctors who have recommended that I be on cell cept and I am now taking mobic and mtx which I have to pay for myself. I wrote the sec of the veteran's affairs and also requested a board. I still haven't been able to tell anyone my side of this story. One doctor actually lied in my case saying that my doctor thought I should be treated for depression and that another doctor said my symptoms were more related to depression that lupus. I have confusion and cognitive problems even when I am on my meds, but when I was off my meds I was defenseless. The more I complain to the va the more they try to document me as a mental case. I don't think someone can lose the diagnosis of lupus cerebritis. Maybe it can be active or not, but you can't say that someone has a mental illness. They two can't be distinguished in many ways. You can even have depression with lupus. I don't happen to be depressed. I know I am not normal. I can live with lupus cerebritis, but if you say I have a mental illness, that my pain is not real and my lab tests don't matter, how can I stay in that reality? I know the va is short on funds, but this is no way to trim. If they don't want to give me my benefits, they should tell it like it is. I have had my eyes replaced and have had broken bones from premature osteoporis from all the prednisone the va has given me and now they are gong to deny me my illness????

Replies(8)

Tallwoman

replied on June 20th, 2004

Experienced User

You Had Your Eyes Replaced?

That was a typo, wasn't it?

ellenoc

replied on June 20th, 2004

New User

Re: You Had Your Eyes Replaced.

I guess I should have said I had my lens replaced. I had cataracts removed. I have silicone lens. I guess I consider that my eyes, but I didn't have my whole eyeball replaced.

Tallwoman

replied on June 20th, 2004

Experienced User

Whew!

You had me going there. I hate when I hear about how the military health system messes with people so. I'm sorry for all your problems with them. I understand completely. My husband was active duty and he had problems with his feet his whole career. He would have to march so much his feet looked like he'd been jumping out of airplanes his whole life (according to one of the navy doctors). When he retired, and sought some disability compensation for his foot problems, he found his medical records had "disappeared." he had no proof. The va said there was nothing wrong with his feet. And that was the end of that. So I empathize with you.

But surely, there are tests that can prove you have lupus, aren't there? Or what if you were to go see a new neurologist for rediagnosis? What does a brain mri show?

ellenoc

replied on June 21st, 2004

New User

Re: Proof

There is overwelming proof that I have lupus cerebrits. That is why I am receiving 100% va disabitlity compensation and I am also receiving ssa disability. So tell me what that matters if these doctors refuse to give me my meds through the va. People should be outraged throughout the administration at the va, instead they are backing the doctors who are denying me my meds. Yes, I can go through all the tests over again, but they are 3 1/2 hours away and I get extremely sick. Why they won't give me fee basis for these tests to be done locally. I don't know. I have an appt for 10/04 to see another va rheumatologist. I have requested that I have psychological testing done at the same time. I am down for a week when I go there and I think it exasberates my cns symptoms. They would give me fee basis to see a doctor who would say I have an auto immune phenomonem, but they won't do for psych. Testing. I have it on record the I have brain damage from cns lupus according to va tests. Why do I have to proove it all over again because two doctors lyed about me. The records dispute what they say, the tests disput what they say. I just wish I could get before someone who would listen to me. They are documenting lies now and leaving out perinent info. The more I say that. The more that I look crazy.

Tallwoman

replied on June 21st, 2004

Experienced User

Advocate

Doesn't the va have some kind of advocate for its veterans? If not, then maybe you need to hire one---in a lawyer.

ellenoc

replied on June 28th, 2004

New User

Re: Advocate

The ombudsman said he couldn't help me because the whole clinic and admin said I didn't have the ilness. I called a lawyer in town who said they gad a conflict of interest with the non va doctor. Another just daid he couldn't take the case, but said it was a case of medmal.

marian33

replied on June 28th, 2004

New User

Lupus

If you go to a arthritis doctor they can test your ana to see if the lupus is active. I have high ana. When I get stressed out my pain is excruciating. It has weakened my knees and most of my joints. What part of the service were you in? My father was in the airforce and when he was dying of copd they told him he spent to much time at the va hospital and the signed him out. Medicare wouldn't cover the expenses so after fighting in vietnam my father had to apply for welfare to cover the cost. This may be something you want to look into.

VetoftheUSAF

replied on February 19th, 2009

New User

get Mayo Clinic involved....by e-mail

send Mayo Clinic an e-mail and request they look at your records through VA for a second opinion...and if VA refuses to pay them call your congressman! Congressional investigations scare the VA too!

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