I agree with everyone else that you probably need a new rheumy. :-(
I know it's discouraging and depressing (at least for me) to have to start over with a new doc, but it'll be worth it in the end if you find someone you click with (geez, I sound like I'm talking about a romance, but you know what I mean!) and who is willing to do the work to get you fully diagnosed and on a treatment plan.
Autoimmune diseases are tough to diagnose (as I'm learning two years into my own search for an answer for my health problems), and different docs often disagree with a previous doc's diagnosis. It's not unusual for people to get an initial Dx, then either their doc changes or their symptoms/tests change and they end up with a different Dx down the road. My rheumy is convinced that the medical establishment has only scratched the surface on autoimmune diseases and that there are many more out there than docs have the ability to diagnose.
Hang in there, and good luck!!
opps sorry, I left out the Dot org
www.lowdosenaltrexone.org
I agree with Kjeltp..
And if you see decide to see a doctor that practices Alternative Meds, ask him what he thinks of this www.lowdosenaltrexone. Its an immune modulator. I don't know if my spelling is correct, but it looks right;o)
Read as much as you can about it. Its not Quackery. The doc that discovered using this drug at low doses is a doctor that came out of Harvard, he didn't get a degree from the back of an organic gardening magazine. He knows his stuff.
He's a wonderful, caring man. I had the honor of speaking to him recently. So kind, compassionate.
I feel your concern, and frustration ( been through the loops myself). "We don't see it, we don't believe it".
Orthodox medicine doesn't have answers for stuff they can't put a label on (even when they do, they seldom cure anything). If I was you, I would try alternative approaches. Your symptoms are pretty classic for "that something is wrong", but nothing may yet have manfested to be diagnosable.
I love that you chose "uncooperative" to describe your doctor. That's what they're always saying about patients LOL
Seriously, if you tested positive for antibodies, you need a new doctor. Medicine is not a belief system, it's a science (or so they say!) Even if he wants to give it a different name, the antibodies are still there.
A lot of your symptoms sound like mine. My BP is so low I pass out and my heart stops. Autoimmune diseases are a major cause of Peripheral Neuropathy. I know you had an EMG, but there's a type of PN called Small Fiber Neuropathy which is not picked up on EMG. You need to have a skin biopsy done, usually by a neurologist. I'll warn you ahead of time though that it's not well known, even among neurologists. Here's the MH page on PN so you can see the list of symptoms:
http://www.medhelp.org/medical-information/show/74
Also, you can check out the dysautonomia forum for more on the dizziness/nausea/low BP
If your rheumatologist doesn't believe that mixed connective tissue disease is real.... then I would consider dumping him and finding yourself a competent physician !
I came up positive for RNP antibodies. That was what signified the Mixed Connective Tissue which my rheumy doesn't believe even exists.
I found it odd that he doesn't believe that MCTD exists as well but what you can you do? :) I've not had an MRI. I had an x-ray of my mid-spine, which I found odd as my problems with my back are lower (around my sacrum) and in my neck. The rheumy has been throwing tons of prescriptions at me but, as he claims there's nothing really wrong, I've been reticent to take them. I'm only on salsalate and tramadol, both for the headaches (they take the edge off) but the dizziness and nausea started long before I started taking them.
Thank you for the advice. I have a feeling I will have to find another doctor but I know it's going to be difficult.
First let me say I am NOT a doctor, but do go to a rheumatologist on a regular basis.
I know this is easier said than done, but maybe you should try a third rheumy, I find it odd that he doesn't believe in the disease.
Also have you ever had an MRI of your spine, with you limbs tingling, maybe it is a herniated disc? I know that if you have problems with your neck it can cause alot of other issue also.
Are you on ant medications now? There are different ones that can cause or make worse the dizziness and headaches, or at least that is what I have been told.
Take Care
bdm