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What Kind Of Rheumatologic Issues Have You Been Diagnosed With?


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I feel like I have "a little bit of everything." No diagnosis is definitive. Had the day/night sleep study and the results were "in the grey area." Not quite narcolepsy, not quite normal. My primary did some rheumatologic blood work, which was also crazy - ANA was positive, titer was borderline normal. I'm seeing a rheumatologist next week, but I feel like it will be another battery of tests with no answers. Just from my research, I would say Lupus is the closest match, but it's not clear cut. Just wondering if there are any rheumatologic issues that go hand in hand with POTS.

I've been living a normal life for the most part, although I have always tired easier than most people, but now I feel like I'm in a steady decline. I just want to know what's going on and how to deal with it.

ETA: after the sleep study, the doc put me on Nuvigil to help with the tiredness but I'm not sure it's making much difference.

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I had a positive ANA this past year, but then they did a more in-depth test(something about double-stranded DNA?) and it was negative. I think they were looking for lupus. I did have Hashimoto's(thyroid removed) and I do take B-12 injections.

I just had a sleep study Monday night. I find out next week what they think. All I know is the lady that unhooked me the following morning asked if I always "sleep so little"! I am just used to being tired all the time. And for the life of me cannot sleep at all during the day.

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My blood work is all over the place. I've had a positive ANA as well, no Lupus. I'm told Fibro people sometimes have this result. I have been diagnosed with Fibro- which has now turned into "undifferentiated connective tissue disease." Was diagnosed with RA, but I don't have it....etc.

My rheumatologist is great, but finds me to be quite the enigma. He keeps suggesting new meds for me to try- none of which interest me, since there's no definitive diag.

Re:"I feel like I have "a little bit of everything." No diagnosis is definitive. Had the day/night sleep study and the results were "in the grey area." Not quite narcolepsy, not quite normal. My primary did some rheumatologic blood work, which was also crazy - ANA was positive, titer was borderline normal. I'm seeing a rheumatologist next week, but I feel like it will be another battery of tests with no answers. Just from my research, I would say Lupus is the closest match, but it's not clear cut. Just wondering if there are any rheumatologic issues that go hand in hand with POTS."

I could have written this myself. I have seen many opinions that suggest Dysautonomia does go hand in hand with auto-immune issues, but again....only symptom treating.

My doc suggested the Nuvigil, but I passed. I'm at a stage where I'm really tired of all the "false starts" and getting my hopes up with new drugs. I just try to muddle through, with wonderful information and support I get here, and my tried and true things. (tried and true for now)

I am glad for you that you're able to live a normal life. Hang in there.

Tommy

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I'm so glad you brought this up. In the past month or so, I've been having pain in the middle knuckles of my hand - the right one especially. In the last two weeks, it's become almost unbearable and I can hardly pick up a coffee mug and any sideways motions involving those muscles sends shooting pains through them. Anyone else? I guess I need to see a rheumatologist...The knuckles of my right hand are swollen and the middle knuckle on my little finger is all red and bumpy.

Anyone? Help?

Cheers,

Jana

Oh, sorry....what's the ANA test?

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I'm so glad you brought this up. In the past month or so, I've been having pain in the middle knuckles of my hand - the right one especially. In the last two weeks, it's become almost unbearable and I can hardly pick up a coffee mug and any sideways motions involving those muscles sends shooting pains through them. Anyone else? I guess I need to see a rheumatologist...The knuckles of my right hand are swollen and the middle knuckle on my little finger is all red and bumpy.

Anyone? Help?

Cheers,

Jana

Oh, sorry....what's the ANA test?

ANA is anti-nucclear antibody test used for screening for lupus and autoimmune disease. You do need to see a rheumatologist and it sounds like you get to join those of us regularly getting a couple dozen blood tests. Please make an appointment as soon as you can - if it is RA or lupus, the pain you feel now is nothing to a full blown flare.

Hope it is nothing and is miraculously gone by morning (giving you enough time to get a rheumy appt)

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Thanks for the responses. It's nice to know that at least I'm not alone. I just want to stop the decline. I feel like my somewhat normal life is slipping away. And none of the meds help. Yeah, I guess they do for a little while, but they always stop working or I build up a tolerance and then I'm worse off than when I started.

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Reen~

Thanks for the reply. No, it hasn't gone away. It's just been getting steadily worse, and any movement at all (like typing) is extremely painful. I can hardly stand it. Do you think I should try Glucomasine (sp?) first? I do have a name of a good rheumy, so I'll call there, too. What's yours like?

Cheers,

J

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Reen~

Thanks for the reply. No, it hasn't gone away. It's just been getting steadily worse, and any movement at all (like typing) is extremely painful. I can hardly stand it. Do you think I should try Glucomasine (sp?) first? I do have a name of a good rheumy, so I'll call there, too. What's yours like?

Cheers,

J

Glucosamine is for osteo arthritis - the wear and tear variety. There are 171 different types of arthritis. It usually takes a while to get a new patient appointment.

Aspirin, alleve, motrin are the over the counter drugs to try. If it continues to be bad you may have to go on the wonderful horrible drug prednisone. It all depends on the rheumy. It took me six months to get my first appointment and I thought I was going in for a fibromyalfia consult 13 years ago. First appointment I was dx with fibro and benign joint hypermobility syndrome. and given blood work. Two weeks later my hands blew up and I went back in, found out I had a positive RA factor, put on prednisone and began the autoimmune waiting game - it was probably another year or so before the dx became official.

You should go to your primary doc in the interim - he/she should test your sedimentation rate and c-reactive protein and prescribe prednisone to alleviate the pain and inflammation as indicated. I broke my big toe during a flare and had no idea because the bone pain from the flare seemed the same. It feels like you are walking on broken glass and your hands have been smashed by bricks. Obviously this is just my experience but if I were you I would not delay getting it checked out.

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Hi. My mother and grandmother both have rheumatoid arthritis, so I wasn't really surprised 5 years ago when I started waking in the mornings with really stiff, painful hands. Because of my family history, I assumed it was RA and my doctor at the time noted that the swelling and inflammation were bilateral - consistent with RA. I didn't see a rheumatologist (no-one in my family does - RA is kind of normal for us). I figured that, if it became a problem, I'd just go onto glucosamine chondroitin, which my mother uses to stop the pain. The symptoms have flared up only occasionally since.

Before Christmas last year when I saw my doctor I noted that I was having a flare-up of RA in the joint of one thumb - my doctor didn't think it could be RA because it was only on one side. I thought, well, what else could it be - it was very swollen, it was red, it was painful and I'd lost function. I guess it might not have been RA afterall, and it might never have been.

I actually tried to take glucosamine chondroitin as planned last year, but developed severe pain in the area of my spleen/left kidney - I don't know if this has happened to anyone else.

A word on lupus. Before I was diagnosed with dysautonomia, a lovely immunologist tried treating me for lupus (on the off chance that this was my undiagnosable mystery illness) - the chloroquin brought on a big exacerbation of my illness.

It could be that everyone else in the world tolerates these substances, but if you're trying them, tread carefully.

With best wishes

Dianne

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I have osteoarthritis, they said it was every where they looked. And they pretty much looked my entire body over. I also have bursitis in one hip and thigh. Ostoporosis and sleep apena with Fibromyalgia and EDS. I think that's all -- and that's enough to have to deal with!!! Then throw in a brain, thyroid, liver and kidney tumor. And stir in the diagnosis of Hyper adrenal POTS. WOW, what a recipe. Not one that anyone really wants. But, I'm dealing!!!!

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