Has anyone here been to a Rheumatologist?

Originally Posted by sharky

... I already have a immune globulin disorder likely to kill me in the next 15 yrs

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Oh sharky! I hope that isn't the case. 15 years is not that long, but still, a good amount of time for research & breakthroughs. Just think some cancers & HIV, which used to be death sentences in the 1980s, 1990s-- now more people are living way beyond what was predicted

Kittymonsters -- you've got it tough, too. Scleroderma is rough. I hope you only have minimal internal organ involvement . So many different Dx...strange they can't find one or two things that explain it all.

Strange wings -- good luck at your appt; hopefully, you're not too spooked by these posts

Too bad so much research$$ goes to more "popular" diseases like HIV/AIDS. Autoimmune diseases need someone in the spotlight to bring awareness -- where's the Bono for lupus or CREST or mixed CT disease?

I'll keep all of you guys in my prayers

Originally Posted by booktigger

...the first one dismissed me for being 'too healthy' - so I had to have another 2 flare ups before it was diagnosed!! ... 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...

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booktigger -- so sorry you had a chump-rheumy early on !
Making a list & taking it to your doc & telling him you have some questions at the START of your appt will hopefully get your concerns addressed.

This website isn't too bad, not too technical:
http://www.niams.nih.gov/hi/index.htm

It's from the National (US) Institute of Arthritis and Musculoskeletal and Skin Disorders - NIAMS, abbreviated.
(Some articles can be translated into Spanish, too.)

Fingers crossed they manage to find some answers to your health issues Sharkey, and that they are wrong.
Thanks Whiskery, I shall have a look at that in a bit.

Originally Posted by whiskerynature

Oh sharky!

I hope that isn't the case. 15 years is not that long, but still, a good amount of time for research & breakthroughs. Just think some cancers & HIV, which used to be death sentences in the 1980s, 1990s-- now more people are living way beyond what was predicted

Kittymonsters -- you've got it tough, too. Scleroderma is rough. I hope you only have minimal internal organ involvement

. So many different Dx...strange they can't find one or two things that explain it all.

Strange wings -- good luck at your appt; hopefully, you're not too spooked by these posts

Too bad so much research$$ goes to more "popular" diseases like HIV/AIDS. Autoimmune diseases need someone in the spotlight to bring awareness -- where's the Bono for lupus or CREST or mixed CT disease?

I'll keep all of you guys in my prayers

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Whiskerynature...how soon before you're a doctor? I have a feeling you will be a good one, you listen.

I am one of those bizarre cases, my immune sytem has gone into overdrive and is producing new autoantibodies every time I get tested. One theory is that this was set off my by Brown Recluse spider bite. I was lucky in MN, I eventually got evaluated by some of the best doctors in the country.

Hopefully in the not too distant future the Human Genome Project will have a positive impact on the autoimmune diseases.

Strange wings, I seconed Whiskerynature's sentiments. Please don't be afraid. It isn't actually scary, just long and drawn out. I think the frustration is the worst, because there are not a lot of concrete answers. Please keep us all posted.

Originally Posted by booktigger

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.

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This is the website to the International Scleroderma Network. TONS and TONS of information at this site about all the connetive tissue diseases. Hoping you get the best news possible at your visit, let us know

http://www.sclero.org/medical/a-to-z.html

PS.. I too have raynauds, it is one of the hallmarks for CREST ( the R is for Raynauds). I get it in my feet too. This is one of the main reasons I had to leave Minnesota, I couldn't do the winters anymore.

Originally Posted by kluchetta

I hadn't heard of the CRF test - what is that?

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Sorry, I'm an idiot. it's a typo.

When I had the first test for CRP he also did a test for CCP "Citrulline Peptide Antibody".

According to the on line medical dictionary at WebMD

"When the citrulline antibody is detected in a patient's blood, there is a 90-95% likelihood that the patient has rheumatoid arthritis. The test for the citrulline antibody is therefore useful in the diagnosis of patients with unexplained joint inflammation, especially when the traditional blood test for rheumatoid factor is negative. "

According to the sheet I got with the test results a Negative is less than 20 a Weak Positive is 20 - 39 Moderate Positive 40 - 59 and a Strong Positive is 60 or greater.

Lucky me I got a 27

One other thing that I found from reading up on this is a high CRP can also be a sign of other things.

My first test was high but started going down. But my all time high was a test that I took when I had a really bad cold. The doctor didn't mention this but in the three regularly scheduled tests since then (no colds) it's been lower with no change of medication.

I'm not sure if I had a CCP test done... I'm missing a couple pages from of results from my last tests

Originally Posted by CheshireCat

According to the sheet I got with the test results a Negative is less than 20 a Weak Positive is 20 - 39 Moderate Positive 40 - 59 and a Strong Positive is 60 or greater.

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Do these vary from state to state, and hospital/clinic?

For just the rheumatoid fact it says 0-39 is negative, 40-79 is weakly reactive, and anything higher is positive.
I've came across stuff online saying that 20 is enough, even though my sheet says thats negative.

Also, has anyones' doctors mentioned if being on really strong antibiotics at the time blood tests were done would affect results?

And I might add, I'm not really that scared (as long as big ugly needles aren't involved ). I've had several years of pain to realize something is going on and already went through the scared and denial phases. Seeing the x-rays for my pelvis, the damage done to it and at my age made me realize I better get my butt in gear in case whatever is causing me to hurt could be causing damage like that elsewhere.

Originally Posted by strange_wings

Do these vary from state to state, and hospital/clinic?

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I don't know if there is any national standard that labs have to follow. The reports that I get have little blocks in a row across the page with symbols representing the thing being tested. There is a result in the box and at the bottom of each box it gives the range that is considered acceptable.

It makes me feel better when I read the results and usually all but one of them are in a good range.

You should really hold off jumping to conclusions until you actually talk to the doctor and get his/her opinion on your test results. I do a lot of reading up on line but sometimes that gives too much information about what could be and that just makes me worry.

Originally Posted by strange_wings

I'm not sure if I had a CCP test done... I'm missing a couple pages from of results from my last tests

Do these vary from state to state, and hospital/clinic?

For just the rheumatoid fact it says 0-39 is negative, 40-79 is weakly reactive, and anything higher is positive.
I've came across stuff online saying that 20 is enough, even though my sheet says thats negative.

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There is no national standard. There are general ranges, but values are very much affected by each different laboratory. You need to use the range set by the lab that is running your tests. That being said, these ranges are generated by drawing a group of "normal" people and using their values to create the range. I take all ranges with a grain of salt, as my personal range my really be lower or higher than what the average range is. It all depends on a correlation between symptoms and results. What I do ensure is that I always use the same lab for my tests. I don't want to introduce inter-lab variation. I have copies of all my bloodwork and I look for trends, even when values are with in range.

Originally Posted by strange_wings

Also, has anyones' doctors mentioned if being on really strong antibiotics at the time blood tests were done would affect results?

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Many different things are affected by different substances. I am sure antibotics affect certain test, just couldn't say which ones. This fact is why some blood tests require fasting, some don't. Some you can't take NSAIDs or asprin before.

Originally Posted by strange_wings

And I might add, I'm not really that scared (as long as big ugly needles aren't involved

). I've had several years of pain to realize something is going on and already went through the scared and denial phases.

Seeing the x-rays for my pelvis, the damage done to it and at my age made me realize I better get my butt in gear in case whatever is causing me to hurt could be causing damage like that elsewhere.

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Very intelligent attitude to have and it will help in the long run. Be prepared for the possiblity that they tell you they can't cure it but they can try to slow it down. Also, the main goal is to increase quality of life and keep you as functional as possible for as long as possible. I know this sounds horrible, but this is the reality for patients with autoimmune diseases.

Originally Posted by kittymonsters

Be prepared for the possiblity that they tell you they can't cure it but they can try to slow it down.

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I've already been told this for arthritis I have in my pelvis. The damage visible on x-rays for that does not look good... I was told if I was lucky that with age maybe it would fuse naturally, never mind the 20-30 years between. So at worst, I won't be told anything I haven't already heard.

I'm not really jumping to conclusions. All I know is that each year the pain has gotten worse. When I was younger it was only be a few hours or a day or two, now I can end up hurting for days until I can't move whatever joint is being affected the most.
Regardless of what happens I do know I should probably be on better medication for my pelvis to keep it from getting worse, the NSAID alone won't completely prevent that, surely the rheumatologist will see to it.

Hopefully the future will hold more research for all forms of arthritis and autoimmune disorders.
Just the other day I saw bit on the news where they were discussing how researchers are working on and have discovered a way to turn skin cells into stem cells. It still needs several years to prefect but it's a step in the right direction to helping many people.

Thanks for the link, will have a look at that at some point, and it might give me more questions to ask the doc - he was hoping that the meds (hydroxycholorquine) would calm my immune system down enough to come off them, but I dont think that is a possibility at the moment, have had to take extra this year (I can't take anti-inflams stronger than ibuprofen either!!), and I think it is down to stress. I am hoping it is something I can beat though, as I am only 25, and have been on meds for either 2 or 3 years now (memory and sleep have also been affected).
Anyone any tips for dealing with Reynauds? I feel odd when I have to wear gloves to go round the fridge and freezer sections of the supermarket!! Mine is secondary Reynauds, which from a couple of articles I found, tends to be the worst, and more chances of complications!!