3rd Request

[Guest guest]

I'm looking for documentation that you can have RS w/o red or swollen

joints. I have asked this twice before and haven't gotten an answer.

Journal articles and/or personal experiences would be appreciated.

I have an Immunologist and an ER Dr. that say I have Reiter's. My GP

says he doesn't know, he referred me to a Rheumy. The Rheumy looked

at my joints and said no to Reiter's. He told the GP " there is no

evidence of inflammatory joint disease " .

Maybe it's AS or something else, but it sure looks like Reiter's from

what I've read.

Please help me.

Sherm

[Guest guest]

Sherm,

Sorry no one replied.

Diagnosis sometimes takes years. Not all symptoms are present at

the same time. There is no definitive blood test that will tell

you that you definitely have RS. Diagnosis is usually built up as

symptoms develop over years and your doctors rule out other

possibilities. Average diagnosis time for men is usually ten

years, for women 15.

Yes, RS can cause red inflammed looking areas around fingers,

ankles, etc., or not. It can cause swelling of the joints. It

can make the joints feel exquisitely tender and painful without

swelling or any redness in surrounding tissues. I can't shake

hands, especially with men who think they have to crush the hand.

I have trouble doing anything that puts pressure on the wrist joint

and fingers like carving a ham. But I've never had red skin around

those joints.

I'd suggest that you go to our web site www.risg.org and search the

information including the links page for data we've gleaned over

the years. RIck Hahn has the web site looking really neat now and

I'd encourage everyone to visit it frequently.

I understand your frustration. One doctor says yes, another says

no. One day you have the symptoms to show a doctor, but the next

time you go the symptoms aren't present. That's one of the

frustrations of this disease. It cycles with remission-like

periods followed by flare-ups. Not every symptoms will be present

in every flareup. Some symptoms are more rare than others.

Try adding Fibromyalgia and Sjogrens Syndrome to the mix and your

doctors can really disagree on just about everything. It is no

fun.

Ray

[Guest guest]

Ray,

You were the only one that replied last time and you've done so

again. Thank you. Your explanation that you don't always have red

swollen joints is what I'm looking for. I've searched the archives

and Googled myself to death, but I can't find any journal info that

says you can have Reiter's w/o red swollen joints. If you have a

reference please send it.

The best I can find are statements that refer to how hard it is to

diagnose because there are no obvious symptoms. Logically this tells

me that red swollen joints are not always present. But the Dr's I'm

dealing with are logically impaired.

I saw my eye Dr last week. I had been in the ER 5 days previous. My

mouth was severely inflammed and my eye looked like a cherry. ER Dr

agrees it's Reiter's. After eye drops and steroid pills it cleared up

before seeing the eye dr. Eye Dr says " if I don't see it I can't

diagnose it " . He also refused to get an ER report for his records.

What he's saying is that medical histories and other Drs diagnoses

are worthless.

I have a list of previous diagnoses that would make your head spin.

They include myofascial pain syndrome, connective tissue disorder,

fibromyalgia, chronic fatigue symdrome, degenerative disc disease,

arthritis, chronis prostatitis, epidymitis, orchitis, Reynaud's

Phenomena and now Reiter's. I believe it is merely Reiters.

I have had skin rashes and eye inflammation for over 30 years. When

it occurs I call the Dr, by the time I see him it clears up. Other

times I go to the ER, they don't know what it is and merely treat the

symptoms. The last time they said to go to a dermatologist and have

it scraped and tested the next time. When I call the Dermatologist

and finally get an app't it's gone. Unfortunately, my disease doesn't

comply with their schedules.

When I saw the worthless Rheumy a while back I was just finishing an

episode of rash. I'm not sure but I suspect it's KB. I asked him to

look at it, he refused. My eyes were inflammed, ( I ended up in ER),

he took a cursory look. The evidence was there and he ignored it.

My story is way too long to get into now. But I'm questioning whether

I had RS at birth. I was a low weight preemie with pancreatitis at

birth. I have a life long history of unusual fevers, joint pain,

conjunctivitis and other problems.

I'm going to be 52 in December and I'm still searching for answers.

As I've said before, maybe the diagnosis will come at the autopsy.

Sherm

> Sherm,

> Sorry no one replied.

>

> Diagnosis sometimes takes years. Not all symptoms are present at

> the same time. There is no definitive blood test that will tell

> you that you definitely have RS. Diagnosis is usually built up as

> symptoms develop over years and your doctors rule out other

> possibilities. Average diagnosis time for men is usually ten

> years, for women 15.

>

> Yes, RS can cause red inflammed looking areas around fingers,

> ankles, etc., or not. It can cause swelling of the joints. It

> can make the joints feel exquisitely tender and painful without

> swelling or any redness in surrounding tissues. I can't shake

> hands, especially with men who think they have to crush the hand.

> I have trouble doing anything that puts pressure on the wrist joint

> and fingers like carving a ham. But I've never had red skin around

> those joints.

>

> I'd suggest that you go to our web site www.risg.org and search the

> information including the links page for data we've gleaned over

> the years. RIck Hahn has the web site looking really neat now and

> I'd encourage everyone to visit it frequently.

>

> I understand your frustration. One doctor says yes, another says

> no. One day you have the symptoms to show a doctor, but the next

> time you go the symptoms aren't present. That's one of the

> frustrations of this disease. It cycles with remission-like

> periods followed by flare-ups. Not every symptoms will be present

> in every flareup. Some symptoms are more rare than others.

>

> Try adding Fibromyalgia and Sjogrens Syndrome to the mix and your

> doctors can really disagree on just about everything. It is no

> fun.

> Ray

[Guest guest]

Sherm: Sorry, I've been away quite a bit. My knee and hand and feet joints

are very seldom (I hate to say never) swollen or red. My rib cage and hips

are a different story. But they all hurt the same. My Rh dr said they don't

need to be swollen. He is very kind when he examines and does the least

amount of pushing and pulling. I still feel as though I were beat up, but

the most painful places, he just takes my word for it.

Question, anybody ever had tennis and golfer's elbow at the same time? Kind

of wierd when I haven't done either of those sports in 20 years. Dr. said I

could have physical therapy, but found out my insurance won't pay for the

first $250. Oh joy, two weeks into school with 2 kids doesn't leave $250

laying around. Anybody done any kind of exercises to help with that problem?

Any suggestions would help. Thanks. Kathy from WI

[Guest guest]

--- In @y..., " Dennis Sherman " <dsherm112@y...>

Sherm, I think you're moving vertically when you should shift to

horizontal thinking..i read a book many yrs ago about horizantal

thinking and the object lesson involved some individual who kept

digging a hole deeper and deeper (vertical thinking) he was obviously

in search of something important and was convinced if he just stayed

on the same path, eventually the prize would be found..the author

used example of digging out of one particular hole and showed that

often the solution to any problem can be found by moving

horizontally..in other words, stop digging in same place which was

unsuccessful;and move to another location (horizontal thinking)which

offered another chance for success and if that doesn't work out in

short time, repeat course and move horizontally,,Now i read that book

about 35yrs ago and may have mucked up the metaphor a little , but

the message is clear..change course..

Toward that end, Find another Rheumatologist (fire your dr's )and

look elsewhere for the ans to your questions..Of course, my opinions

are just that:'my own opinions'and i don't have professional

qualifications..But i do have a long experience similar to yours and

i would still be wandering around without a clue had not a

neurologist sent me to one of the top rheumatologists in NY

City..Within a few hrs he'd made the correct diagnosis and started

treating me according to that dx of RS..That was 6 yrs ago..

I think you might try at this point to seek out some new drs (again

just my opinion)..I believe you live in PA or MD and I can think of

three locations where you would most likely get a proper dx...s

Hopkins ; University of Penn Hosp Ctr ; or Hosp for Sp Surg in NYC..

if you want any more specifics you can contact me directly and i'd be

glad to provide dr names...

jeff Lanneau RS

[Guest guest]

Dennis Sherman wrote:

>

> Ray,

>

> You were the only one that replied last time and you've done so

> again. Thank you. Your explanation that you don't always have red

> swollen joints is what I'm looking for. I've searched the archives

> and Googled myself to death, but I can't find any journal info that

> says you can have Reiter's w/o red swollen joints. If you have a

> reference please send it.

>

Sherm,

I hear your frustration and I sympathize. But, that you've

'Googled' yourself to death, can't get any answers from journals

or doctors and 2 requests here should tell you something.

In most scientific research, a negative is as good as a positive,

meaning if you can't get proof of your thesis then perhaps there

is no proof thereby disproving the thesis.

This is just another way of saying what Jeff said, look in another

direction (not another arena, I certainly don't want to discourage

you from here). But, that no one here responded tells me that

people don't know what to say. Either the readers have no answer

or are confused by what you might be asking.

When I read your first (and subsequent) requests, I felt a lot of

anger, a lot of frustration from your words. And, I felt a

request for answers that just don't exist. Perhaps I should have

responded then, but, to be honest, your words mostly just brought

up my own feelings of frustration and anger. I have had symptoms

for well over 30 years, my first symptoms started some 45 years

ago. But, I was totally disparaged and not believed until an

MRI of my back 2 years ago showed severe damage. So, you are

not alone in your frustration. Many, perhaps even all of us, here

have experiences the same, similar or even worse than you.

I sympathize, I think I speak for all of us, we all sympathize.

Don't give up faith, don't give up on yourself. Just because

the doctors haven't been helpful doesn't mean that you can't/won't

find one who will be helpful. Even if you never find the definitive

answer to this question, you should be able to find some treatment that

helps.

My own doctor has written psoriatic arthritis (PA) as

my diagnosis, but she admits that this is to satisfy the paperwork,

she doesn't really know what I have, something in the family

of sero-negative autoimmune arthritic response that mainly affects

the spine. She says it doesn't matter, there are no tests that

will definitively tell her what I have, and it's a matter of trial

and error to find a treatment that helps, and even that is a

matter of chance as everyone responds differently.

We all want answers, but in real life, not just in medicine,

it is rare to find real answers to anything.

Good luck, look for peace and I hope you achieve it.

Keep in touch.

kjg@...

Canberra, ACT Australia

[Guest guest]

,

That was a very well written post. Thank You. Yours, Harv