Muscular/skeletal problems, please advise!?
I was born with JRA and it progressed as I got older. When I was 12 I was permenantly in a wheelchair. But when I was 18, after my DPTP imunization, I presented as though I had Polio. I didn't, and every year I get worse.
My large muscle groups (hips, thights, shoulders, back, abdomen) do not respond well, and have very restrictive movement, weakness, and pain. My muscles and joints cannot support me. I am in constant pain despite fentanyl.
I have had a muscle biopsy for MD (neg.), evoke potentials for MS (neg.), and other many tests, none conclusive. I am soon to go in for another round of these tests, since it's been 10 years. I have had many diagnoses from ME, CFS, fibromyalgia, etc. But none of these have proved true due to presentation. I also am always exhasted, and have sleep apnea that does not respond to CPAP.
I am asking anyone to give me some hint as to what might be wrong. I am desperate to know. If you want more info, please email me.
I do have maintenance therapy to keep my range of movement (had it since I was little). Any more intense PT actually makes me worse in the long run. Some of the tests are by specialist, some by family doc. They think there may be something wrong with how my brain talks to my body. But no disease name.
Public Comments
1. Have you worked with physical therapists at all? Even if you are unable to get to a rehab, most home health care companies offer physical therapy in the home. There is something my company has called Annodyne therapy which focuses on chronic pain. As far as what condition is the cause, if all tests are negative, it may be a condition that is not commonly known. Are the test being done by specialists or your family doc? I would look into some physical therapy to help with range of motion and preventing contractures and deconditioning of the muscles. The less they are used, the more they deteriorate. Good luck, I wish you all the best.2. This may sound a little crazy to you, but let me tell you what happened with my mother. She had what the doctor called a sudden, severe attack of rheumatoid arthritis, and was in a nursing home but eventually was able to go home, and had a very good doctor, but had lots of pain and things she couldn't do. Finally she decided to come from the west coast to Texas for a visit.
I told her to ask her rheumatologist if he had ever heard of a relationship of RA to allergy, and he said yes, there were foods that seemed to make it worse. Then I asked her to find a doctor who knew about clinical ecology, and to be tested for allergies, which she did, and then called me.
She said "No wonder my hands were so sore and I kept them under running water in your sink, (warm or cold?)"
While she was here she had corn on the cob, corn bread, deep fried fish (dipped in corn meal to fry), and cream style corn, and when the testing showed allergy to corn and she left it alone, the pain went away. She had not been able to raise her arms up high at all, but can now put them straight up over her ears, also eliminating the things she tested allergic to. She was allergic to corn, beef, garbanzo beans (!) but that included peas, beans, peanuts, and when she stopped eating the things on the list, she got enough better that her doctor was arranging to have new joints for her fingers.
But her age and cancer canceled that plan.
Why not Google Theron Randolph, and see of you can find one of his books, "An Alternative Approach To Allergies".
I did google "juvenile rheumatoid arthritis, allergies", and found the web site below, and I'm including a book mentioned in this article about Heidi, who had JVD. You'll find her story interesting reading.
"I was given the book Is This Your Child by Doris Rapp. Dr. Mercola began testing Heidi for allergies and found she was allergic to all types of mold, formaldehyde, milk, wheat, corn, beans, peanuts and tomatoes. The connection between what she ate and how she felt was amazing. Corn products produced excruciating pain. We discovered many food products have corn hidden in their ingredients...."
http://www.rheumatic.org/heidi.htm is the site, and Dr. Doris Rapp has other books on allergy also.
I hope this information is able to give you a much better life to look forward to. May God bless you.
