RE: i'm new to the group - please read

[Guest guest]

Helen, Reiters or Reactive Arthritis is hard to diagnose and even harder to

treat. Going to a psychologist isn't actually a bad idea sometimes. They can

act as an advocate in helping get you treatment. However in your case,

frankly your rheumatologist doesn't sound like she or he has a clue about ReA.

Reactive arthritis doesn't usually affect the joints, it affects soft tissue

organs, so you wouldn't expect to see swelling or redness in the joints. Dump

him or her asap. I would seek a second opinion. The one you have now doesn't

seem to have experience with the disease. Unfortunately, rheumatologists being

unfamiliar with Ankylosing or ReA treatment is fairly common. Also don't

expect the rheumatologist to be able to treat fibromyalgia problems or eye

problems or other problems. You have to see seperate specialists for each. It

is a

truism, but with this disease you either end up being your own doctor or

getting your General Practioner to quarterback among all the different

specialists. hope this helps.

[Guest guest]

Helen,

I am so sorry for what you are going through. There are people in the group

in the UK so I hope they will respond with suggestions of doctors. I'm in

the US.

I developed symptoms of Reiter's at age 10 and was not diagnosed until age

34. When I was a child, doctors were very unsympathetic. I was lucky to

find a good rheumatologist at age 34, and he also referred me to a good

physical therapist.

I have had problems with rapid heartbeat as well, and I have noticed a large

number of people in this group report the same thing. I had an

echocardiogram and an electrocardiogram earlier this year and both were

normal, so they've never found a cause. However, Reiter's can cause heart

valve problems, so I hope they will do an echocardiogram on you (ultrasound

of the heart).

God Bless,

Janet in San Francisco

ReA (Reiter's) since 1973; diagnosed 1997; HLA-B27+

[Guest guest]

Hello Helen,

I can only really relate to some of the symptoms that you've written down here.

But I can appreciate the problems that you've had with convincing doctors that

you have a problem. (I live in the UK too!)

The psychologist seems to be part of the course over here, so I shouldn't worry

too much about that side of things. (Except that it wastes time, of course.)

I assume that he told you that you weren't ill at all, and that it was all

Psycho-Somatic?

I have already changed my G.P. once and I'm now wondering whether I should try

to do so again. (If I can.)

If you live in a big city area, like London, Birmingham or Merseyside, you may

find it easier to get a second opinion and to change your G.P. if you want to.

And equally, you should have a greater selection of Consultant Rheumatologists,

Urologists and Enterologists to choose from.

So, I guess that if you're not satisfied with the answers you've received so

far, then changing your hospital and the doctors you see there, could be your

best option.

If you live in a rural area, like I do, it may be more difficult to get another

opinion, unless you can afford to go " Private " .

(As I'm sure you're aware by now, the UK Health Service is in an " hell of a

mess " at the moment.)

I'm also quite new to this condition, so I think that the other members of this

group are more experienced with the disease; and they are definitely better at

comparing symptoms and advising you on the best course to take.

(Many are women and they often have different symptoms from us guys,

particularly at the beginning.)

Personally I can't understand some of the 'blinkered' foolishness and arrogance

that I've experienced within the UK Medical Profession to date, with regard to

this illness. (It certainly beats me why!)

And I feel that there just aren't enough warnings and/or available information

about this disease in the UK.

I, personally, had no knowledge about it whatsoever......Before I was finally

told that I probably have it!

Anyhow Helen, good luck with the disease and 'sorry you've had the misfortune to

find yourself in this position.

Best regards!

Mal.