Introduction and advice

[Guest guest]

Hi,

I'm Bill from NH. But I actually consider myself a Massachusettsan having

lived there all but 3 years of my life. I lived in East Boston for over 50

years. So I consider myself still an East Bostonian. Anyway, I've been

thankful for this group. I have had RS since Dec. 1957. I spent 7 months in

Army and Naval hospitals. And this disease devastated me through life. I can

honestly look back and ask: " How did I make it? " I just turned 17 when I

joined the paratroops. In army basic I was number one in physical tests:

running, push-ups, sit-ups, chin-ups, etc. By Dec. 1957 I was laid low. From

our post clinic in Germany I was rushed after three days there to an army

hospital in Munich Germany. The army doctor said: " You're a classic case of

Reiter's Syndrome. " I had the triad severely. The way I got it is presumed

now by sexual contact. However, at that time I was found not to have

anything such as ghonnohrhea, or any other sexually transmitted disease. But

this was a period of time before we knew about clhymedia or such things.

Interestingly, I was the lucky guy. I was the only one in the service around

Southern Germany, in the services of around a hundred thousand guys to come

down with RS. Later years in around 1980 I was tested and found to be hla-b27

positive. When I first got it, I couldn't walk for over 4 months. When I was

about to get discharged from the hospital, the doctors asked me what I wanted to

do. I said I just want to go home because my service time was just about up,

and I knew the VA would take care of any problems I might have. Besides, I was

told that I might get only another but small flare. Boy, was that ever wrong,

and I was in for a nightmare. From the time I got out of the service I had

problems. If I bowled, my knee would kill me. I ended up getting little help.

Within 6 months of being out of the service, I had a complete flare that

devastated me so that I ended up in the Boston City Hospital where they

diagnosed it as RS. A;month after I got out of the hospital I got a appointment

with a VA rheumatologist in the Boston VA clinic. Well, I saw this guy twice.

He absolutely blew my mind. He saw my ankle was still swollen, heard my

history, and practically shouted at me: " I don't know what's wrong with you.

I can see your ankle is swollen. But it's not arthritis!!! It doesn't show in

your blood!!! " From that point on I was on a journey of seeing local doctors

that knew nothing about RS. But I tried to get relief. At the VA I go no help

for years. The only thing I got was bottles of aspirin and painkillers from the

VA clinic. Once a VA clinic doctor pulled me aside (after I had seen him and

I was coming back from the pharmacy, struggling to walk, and this was 8 years

after I first got RS), he said to me: " Listen, I'll deny I told you this if you

quote me. But I'm advising you to park your ass over at the emergency room of

the VA hospital. Anyone as bad as you obviously are should be over there--not

here. " I really thanked him, but I said that I thought I was getting better

and all that I wanted was to be well enough to get back to doing some work.

This is what I went many times. Finally, after 21 years the VA awarded me 40%

disability (not retroactively). Eventually, my back was ruined by trying to

work while I had Reiter's spondilitis, and ended up with a lot of spodylosis,

herniated discs, stenosis--lumbar and cervical. I even ended up with 5

cervical laminectomies. I also have secondary sjogren's. That was a major

trip in life trying to find the proper treatment.

Anyway, after reading many posts by members, I see all sorts of medications

that I've never had a chance to try. So I went to Beth Israel Hospital in

Boston to see a rheumatologist. In the first two minutes of talking to her, she

flat out told me that I could not have had all the problems with RS that I

stated. I asked her if she had ever heard of RISG.ORG? She said no. I

described it for her. I showed her reports of evaluations by other board

certified rheumatologists that said unequivocally that I have had had a journey

through life of problems with RS. She took the reports and dismissed them. I

was about to walk out, but I went through an exam. She said: " I can't find any

inflamation. It looks to me like your problems are just muscular. " Well, the

following day I saw a rheumatologist at the VA that I had been trying to see for

over a year. She had two other rheumatologists from Boston Medical Hospital

to see me. They put me through a superbly thourough examination for almost an

hour. I told them about the rheumatologist who denied there could be chronic

ongoing problems with RS. I asked them how she could have such an attitude, and

she is also suppose to be an instructor in rheumatology. They said: " It's

because she never has seen that many patient's with RS. At the VA we probably

the most. " The advice I'd like is how do I write this rheumatologist to shake

up her smug arrogance which is nothing but ignorance? It may seem strange to

you people for me to want to do this, but it was like facing the ignorance of

so many doctors from the past that hurt me that in this day and age I would

not expect to see it again. Also, I want to write her--and refer her to

sources--that just might educate her, so someone else with chronic RS may not

be hurt by her. By the way, I was eventually given 100% service-connected

evaluation by the VA. For me to get it, I put a team of five top specialists

together, had them completely review all medical records, and one of the

doctors a former head of VA rheumatology clinic and head of a major Boston

rheumatology clinic wrote my appeal for increased evaluation by the VA. Even

then the VA put me through a medical evaluation by board certified VA

rheumatologists over a three day period in one week. I never heard of anyone

going through something like that. I was amazed when I got the 100%

evaluation. Thank God or whomever or whatever. I'm very grateful. So, this

is part of my story. Anyone with any advice as to how to write that doctor ,

I'll appreciate it. By the way, I only went outside the VA because I know

that the VA does not provide a lot of medicines for their doctors to prescribe

that are available on the outside. I also want people to know that I have seen

a lot of good care that was far superior at the VA than I've seen at private

hospitals. Also, people should know that this present administration ( opposite

to their flag waving and posturing) has been doing a major butchering of

services for veterans at the VA clinics and hospitals. Thanks for reading

this long post. Anyone who wants to write, please do so.

.Brazil@...

[Guest guest]

Welcome! I am glad you are a part of this group!

I will try to respond more to your note tomorrow.

Bless you for all you have endured.

K

Adrienne's Mom

[Guest guest]

Hi , welcome to our group. First it is not unusual (to quote Tom

) to find Rheumatologists who are unfamiliar with Reiters, Reactive

Arthritis

and Ankylosing Spondylitis. Keep trying. Also keep trying to find a

sympathetic General Practitioner who will treat you. With this disease you

either

end up becoming your own doctor or you end up having your GP sending you to

different specialists to deal with the various symptoms. This means that if you

have eye symptoms, you get your GP to send you to the ophthmologist. If you

are having fibromyalgia pain, ask your GP to send you to a pain clinic. If you

are having skin symptoms, ask your GP to send you to a dermatologist, if you

are having bowel problems, ask your GP to send you gasto-intestinal specialist

-- get the idea? The rheumatologist will never be able to deal with all your

symptoms, especially fibromyalgia. Hope this helps. Matt

[Guest guest]

Congratulations on the 100% evaluation. After dealing with this disease for

almost 50 years...they finally have reconized your disablity and pain for all

this time. It really should have been retroactive. Many people were

undiagnosed, especially in those early years (before the 60's). They couldn't

understand

why my aunt (in the 40's) didn't test positive for RA. They treated her with

gold salts and aspirin...until she almost died with stomach ulcers. She died

from lung cancer...before they discovered that there was such a thing as AS in

women. She was wheelchair bound and on her few good days used a cane to get

around. Like you, my brother came down with AS while in the Army, however...he

was Dx properly by an outside Rheumatologists who helped him get a 70%

disability. I believe we had a man with our group ( Zare) who, after many

years,

was reinbursed retroactive for his disability. Maybe will read this

and come forward? I'm so sorry you have suffered and gone through so many

surgeries...without proper Dx. We welcome you to the group and would love to

hear

more from you. Best wishes, Connie (granny)

[Guest guest]

Hi ,

It took about 15+ years for me to get a diagnosis of AS. Before that,

all doctors provided referrals to psychiatrists and that was all they

had to offer.

You must feel relieved to have gotten where you are today (I've read

repeatedly about the present administration treating, not only veterans,

but the current solders, badly). I've found that persistence is key to

getting what you need.

Great to hear from you -

Pat