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Confusion and an Uncooperative Doctor
by DeliaDee, Oct 01, 2009 09:33AM
I am at my wit's end and am hoping someone has a word of advice for me. About 2 or 3 years ago, I started experiencing stabbing pains in my thighs, tingling arms, and fatigue. It started worsening and then weakness, tingling in my legs, feet, and hands were added into the mix, along with severe headaches and dizziness, and muscle pain. I finally went to the doctor and found I was positive for the antibody for Mixed Connective Tissue Disease (I do have all the symptoms). I was referred to a rheumatologist. The specialist I was initially assigned to and I had a personality clash and I believe you have to have a good relationship with your doctor so I requested a different one. Apparently, the people at the practice had a problem with my decision and the next day I was told by the office manager that no one there would see me so she gave me the name of another rheumatologist. I've been to see him twice now. He doesn't believe that Mixed Connective Tissue Disease exists. I've had a stress test, x-rays (chest, mid-spine, knees, and hands), and an EMG. All negative. I have also had low blood pressure (ranging from 100/55 to 80/45) and low blood sugar (ranging from 55 to 60) for the last couple of years which have exacerbated my problems. My joints are making it very difficult to function and my thigh and neck pain are getting much worse. My limbs and face are now almost always tingling and the dizziness and nausea are disconcerting. My doctor, since he can't find anything other than a disease he doesn't think exists, thinks that my entire problem is disturbed sleep. I tried to explain that I sleep like a log but only wake up in the night because of the pain - not the other way around - but he doesn't listen to me. I told him that my hips go completely numb - not asleep numb but novacaine numb - he ignores me. I'm paranoid about talking to my primary about finding another doctor because of what happened with the one she initially sent me to - I don't want to be considered a problem patient since that would make it even harder to get help.
Please. Does anyone have any suggestions or words of wisdom for me? I used to be rather athletic and now I barely feel human. Please help. Thanks for listening.
Please. Does anyone have any suggestions or words of wisdom for me? I used to be rather athletic and now I barely feel human. Please help. Thanks for listening.
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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
Was your ANA positive ?
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.
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 !
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
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.
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.
www.lowdosenaltrexone.org
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!!