Has anyone here been to a Rheumatologist?

strange_wings

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I've been scheduled in to see one in August, the information sent from the clinic says that I should expect to be there for 3 to 6 hours... Aside from an exam, blood tests, and x-rays, what should I expect? ..I've seen mention (online) of joint fluid being drawn to help in diagnoses, to be honest, that spooks me.

For those here that have RA or other rheumatic diseases, what is it like for you? How many years have you had it? What was your visit(s) to the Rheumatologist like?

I do not know anyone personally with RA(or like diseases) and have no one to talk to about it. DH tries to be understanding but really doesn't know what it's like to hurt and be tired for no reason (or for what seems like no reason to him).
I'm mostly thinking about this today because someone mentioned having RA in another thread and because I over did it yesterday (paying for it today
).
 

duchess15

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I haven't been to one, but I might be going to one in the future. I wish I could help you out more!
Sorry to hear that you have to go see one. I'm sure all those procedures don't sound like too much fun.
 
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strange_wings

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Originally Posted by Duchess15

I haven't been to one, but I might be going to one in the future.
Well if anyone that has been to a rheumatologist comments then we'll both learn!
 

kluchetta

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Hugs to you. I haven't been to one, although my primary care physician wants me to.


But I had my surgery 4 weeks ago and feel fantastic.

I hope your doctor can help you as well! Keep us updated!
 

sharky

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It wasnt bad... he diagnoised my fibromyalgia and stated the blood work( alrady done) showed that I might have early rumatoid arturistis but the numbers for too low for a formal diagnosis
 
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strange_wings

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Originally Posted by kluchetta

I haven't been to one, although my primary care physician wants me to.
If your doctor suggests it, then doing so may be for the best. Do you ever ache in any other joints? or did they just see something on blood tests?

Originally Posted by kluchetta

But I had my surgery 4 weeks ago and feel fantastic.
I'm glad your surgery worked out so well for you!


Originally Posted by sharky

It wasnt bad... he diagnoised my fibromyalgia and stated the blood work( alrady done) showed that I might have early rumatoid arturistis but the numbers for too low for a formal diagnosis
You do not need a positive rheumatoid factor to have RA, they call people without it something negative (starts with an S I believe). Mine was only 20. And I didn't get the other two pages of results, need to ask for those the 15th. There are newer tests, one I'm pretty sure I didn't have yet, that are more definite. I've read up on fibromyalgia, sounds like a real pain in the butt since some doctors don't consider it a real disease/disorder just because they can't actually 'see' it in tests.
.
 

kluchetta

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Originally Posted by strange_wings

If your doctor suggests it, then doing so may be for the best. Do you ever ache in any other joints? or did they just see something on blood tests?
It's because my CRP is high (cardio reactive protein). I don't ache in any other joints, but since my body has been fighting with this hip for so long, I think it was the amount of inflammation in my hip that was causing it.
 

whiskerynature

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I've read up on fibromyalgia, sounds like a real pain in the butt since some doctors don't consider it a real disease/disorder just because they can't actually 'see' it in tests.
.
You don't need a positive RA test to have RA, but if it's negative, the chances that you have it are very unlikely. You might then have some type of sero-negative arthropathy.

Fibromyalgia is a toughie. Some doctors believe in it; others don't and use it to describe whatever they can't figure out, esp. any achy, fatigued woman
-- wholly inappropriate, I think. Really makes me angry, actually.


Some things to think about & maybe make a list to take to the doctor:
1. What hurts? joints vs. muscle symmetrical or just the left vs. right side?
2. Any swelling? Redness? Warmth? any meds make it better?
3. Morning stiffness? lasting more than 1 hr?
4. Family history of joint problems
5. Depression or dysthymia (milder depression that lasts years) -- could this be contributory?
6. Any other body systems affected? ex. dry eyes, frequent UTI's, etc.

Unless you have some swelling or deformity, scary procedures like tapping the joint with a needle probably won't be necessary.


P.S. I have been to see a rheumatologist, and I really DID NOT like the person that I saw. I have aches in my joints, but he was insistent on the fibromyalgia picture -- but I DON'T have those tender spots. I'm training to be a doctor, but even if I weren't, I can still tell the difference btwn pain in the joints vs. muscles! To try to push this Dx on me, he pressed so hard on certain spots that he left me w/ 3 quarter-sized bruises!

P.P.S. Rheumatological diseases and the symptoms they produce can be caused any a great number of things
. Don't give up if the first couple of doctors you see can't get it right. At the very least, you can manage the symptoms so that you can enjoy a good quality of life. GOOD LUCK!!
 

deljo

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I have Lupus which is a autoimmune diseasesimiliar to R.A. and Fibromyalgia. I take various meds and have blood work frequently. Some of the meds are the same as given to R.A. and fibro patients. My internist also sub-specializes in rheumatology. I would suggest you go to WWW.Healthboards.com, this is a message board and covers all sorts of medical conditions. I've found it to be very helpful.
 
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strange_wings

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Originally Posted by whiskerynature

Unless you have some swelling or deformity, scary procedures like tapping the joint with a needle probably won't be necessary.
Oh good, this is what I was most curious about... whether anyone was going to come after me with a big ugly needle


As for the list, I have 10 pages of information I need to finish filling out, as soon as I figure out how to answer some of the questions.

It does ask about dry eyes.
Interestingly enough, the last time I had my eyes checked I was told I had dry eyes
I didn't believe the optometrist at the time, but the last 5 months or so I've actually started to notice it.
Originally Posted by whiskerynature

To try to push this Dx on me, he pressed so hard on certain spots that he left me w/ 3 quarter-sized bruises!
Tender or not that must have hurt!
Originally Posted by deljo

I have Lupus which is a autoimmune disease similiar to R.A. and Fibromyalgia. I take various meds and have blood work frequently.
.....
I would suggest you go to WWW.Healthboards.com, this is a message board and covers all sorts of medical conditions. I've found it to be very helpful.
Sorry to hear you have Lupus.
Have you been able to get it under control with medicine?

I do know of the healthboards and have considered registering before.
 

cheshirecat

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I have Seronegative RA. The negative meaning I don't test positive on the regular test for RA. I also have osteo arthritis that was getting worse even though I was treating it. Which is why I went to the rheumatologist in the first place.

I really like my rheumatologist. He's a really nice guy that is really into helping people.

Because the standard tests for RA were negative his first thoughts, based on my x-rays, were that I had Psoriatic arthritis. This form is diagnosed by drawing joint fluid. I have to tell the truth that it was not a fun thing having it drawn but it was not that painful. He numbed the area before taking the fluid.

When I tested negative on that his next thoughts were that it was really RA. Turns out that I tested very high on the CRF test and this clinched the diagnosis.

Now I am on medication to try and stop my body from doing more damage to itself. Also I have blood tests on a regular basis to check my CRF level and monitor for possible liver damage from the drugs.

It's may not be fun but my advice to anyone is see a specialist and get it treated! Catching it sooner than later is the best way!
 

duchess15

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Originally Posted by strange_wings

I've read up on fibromyalgia, sounds like a real pain in the butt since some doctors don't consider it a real disease/disorder just because they can't actually 'see' it in tests.
.
That sounds like the exact problem about my hip pain. It can't actually be diagnosed because there is no one test that can pinpoint it and that is a pain in the butt.
 

sshapkido

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Originally Posted by whiskerynature

You don't need a positive RA test to have RA, but if it's negative, the chances that you have it are very unlikely.
Actually about 20% of patients with rheuamatoid arthritis have a negative rheumatoid factor. Also, if the rheumatoid factor is negative, they are likely to have a less aggressive disease.

Wings, I wouldn't worry too much about having fluid drawn off a joint. Unless your diagnosis is in question or the doctor thinks it might help to inject your joint with steroids, it's not likely you'll need that done.

Be sure to ask questions if you don't understand what the doctor is saying. Good luck.
 

whiskerynature

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deljo & sharky, I hope your docs respect your symptoms and your Dx of fibromyalgia, and treat you properly.
It just gets me so angry
when I hear docs bad-mouthing female patients with joint complaints (yeah, as a female-doc-in-training, I'm so disappointed that it's still a sexist world out there/old boys club atmosphere).

Hopefully, for fibromyalgia and other hard-to-define & diagnose conditions, researchers will come up with some sort of test for rapid Dx (and of course, a cure, too!)


Feel better everyone!
 
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strange_wings

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Originally Posted by sshapkido

Wings, I wouldn't worry too much about having fluid drawn off a joint. Unless your diagnosis is in question or the doctor thinks it might help to inject your joint with steroids, it's not likely you'll need that done.
I was threatened with injections in my pelvis if anti inflammatories didn't help, but that would be for dx'ed arthritis. While the medicine takes the edge off, it's losing effectiveness... but I do not want injections(guess I'm a wuss?
).

Originally Posted by whiskerynature

It just gets me so angry
when I hear docs bad-mouthing female patients with joint complaints (yeah, as a female-doc-in-training, I'm so disappointed that it's still a sexist world out there/old boys club atmosphere).
I'm hoping that won't be a problem for me, the Rheumatologist I was referred to is a woman.
 

sharky

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Originally Posted by whiskerynature

deljo & sharky, I hope your docs respect your symptoms and your Dx of fibromyalgia, and treat you properly.
It just gets me so angry
when I hear docs bad-mouthing female patients with joint complaints (yeah, as a female-doc-in-training, I'm so disappointed that it's still a sexist world out there/old boys club atmosphere).

Hopefully, for fibromyalgia and other hard-to-define & diagnose conditions, researchers will come up with some sort of test for rapid Dx (and of course, a cure, too!)


Feel better everyone!
I did get initial treatment and then went natural
... My dr was great but he was ready to fill out disability papers ... well 4 yrs later I am doing well in that area ..... My RA factor was positive just borderline a firm diagnosis ... it is a diagnosis I dont want ... I already have a immune globulin disorder likely to kill me in the next 15 yrs



Strange wings I hope they get to the bottom of your issues
 

kittymonsters

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I am an autoimmune nightmare. My original diagnosis was Chronic Fatique Syndrome and Mixed Connective Tissue Disease. This has now become CFS, Crest Scleroderma (systemic form), Anti-phospholipid syndrome, Hashimoto's and the newest addition Primary Biliary Cirrohsis. I have now been ill for 13 years.

So far the only big nasty needle I have had were the two spinal taps when I first got sick, and the liver biopsy. Neither done by the Rheumy, neither of them fun, but not painful either.

The worst thing is being told you are just depressed. I was actually excited by that diagnosis at first because there are good treatments for depression now. The shrink had to call my PCP and tell him he better find out what was really wrong with me because I was most certainly NOT depressed. It was actually the shrink who found my ANA, a nice high titer of 1:1280. Stupid PCP, finally I found a new doctor...actually I have 4 I see on a regular basis, PCP, Rheumy, Gastro/hepatic and the endocrinologist. BLECK

Also, Fibro is different than CFS. They are NOT interchangable and not the same disease. I wish the medical community would get educated on what the real science says and stop injecting their own personal opinions. I was in the medical field as well, and the personal assumptions and judgements made by a great many doctors is disgusting.

Be prepared to stand your ground Strange-wings and don't let any doctor tell you something you know is not true. If you don't like the Rheumy you see, get a new one. If the doctor does not touch you gently, then they are NOT a good Rheumy. Good Rheumys know that even the slightest pressure or movement can cause excruciating pain. Make sure your doctors are willing to communicate with each other. find a good team of PCP and Rheumy.

If you have pain, then demand a pain management routine that works. If that include pain meds, then it includes pain meds. Don't ever let a doctor tell you your pain is not real. If you have a really good accupuncturist in your area, it works.

If you want to PM me with other questions I would be more than happy to help support you in any way I can. Autoimmune diseases are often painful, debilitating, and difficult to cope with because very few people understand but are willing to make sweeping statements on just what you need to do to get better. I actually just had a person tell me yesterday that I should get pregnant and that would shock my system back to normal. They were completely serious.


Finding people that can really empathize makes all the difference in the world. It won't make you better but it will really help you cope and make the most of life with a chronic illness.
 

booktigger

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I am glad I found this thread - I see a rheumatologist (next due next month actually), I apparently have a connective tissue disorder combined with Reynauds (so in the winter I never fully know what is actually causing the painful fingers!!), but the meds are controlling it well - he just wants me to reduce my dosage this year, but had a very stressful start to the year, and ended up increasing dosage rather than reducing!! I have actually seen 2 rheumy's, as the first one dismissed me for being 'too healthy' - so I had to have another 2 flare ups before it was diagnosed!! have also had the blood tests done for arthritis, and the tests for Reynaud's weren't pleasant either. IF anyone has any info on connective tissue disorders, I would be interested to read them, I Can't really find that much on the net, and might end up forgetting to quiz him next month. I am never there that long, but that is mainly cos bloods had already been done by the dr, I have had a few x-rays, the longest tests were the ones for Reynaud's and I had some imaging done of my fingers at the same time, to check the capillaries, they were done at a specialist hospital.
 

cele

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I was diagnosed about two years ago with Sjogren's Syndrome, another of the auto-immune disorders. It has caused early onset arthritis and I have the dry eyes and mouth. I have a great rheumatology group, though, with five great docs only about 45 minutes from my home.

I turned out to be allergic to the "gold standard" medication for Sjogren's, so I only take meds for the arthritis right now. I was diagnosed pretty early in the disease progression, so the dry eyes/mouth don't require any meds yet other than over the counter stuff.

I agree with the advice given here that you should make sure you find a doctor you are comfortable with. It should be someone that treats you gently AND is willing to answer all your questions!! Make sure you find someone that will do both! Good luck!
 
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