Long, strange trip
April 2006 - I was attending a conference for work. I went out with friends for dinner. When I came back to my room I felt ill. I went to bed early and tried to sleep. The next morning I felt worse; my stomach hurt, my back hurt. My head hurt.
Days passed and I still felt bad, new symptoms each day. My legs ached.
I had purchased a new bicycle and I tried riding a little each day. I felt a growing numbness from my waist down but wrote it off as not being used to the riding.
Then the tightness around my waist began and didn't go away. It hurt to even wear clothes. I began going from doctor to doctor, trying to find out what was wrong with me. My family doctor thought it was a virus. The gyn doctor wanted to do an exploratory laparoscopy. I declined. It didn't feel right. The gastroenterologist wanted to do a colonoscopy. Again I declined.
I finally saw a neurologist. He did some tests and told me I had something called a syrinx. I looked it up. It was something rare and was usually diagnosed as a teenager. I was 56!
I took my x-rays to a specialist, a neuro surgeon who had treated my brother. He told me he knew my doctor who was a good man and a good doctor, but wrong. This doctor said I had transverse myelitis.
I took this information back to my family doctor along with a letter from the neuro surgeon. He changed his tune immediately and referred me to another neurologist. He did a lumbar puncture and told me I had M.S. The whole process took eight months of being pushy and demanding.
I started on Rebif. Up to that point the M.S. was a small rock I carried everywhere. On Rebif it grew to the size of a boulder and I was under it. I was so fatigued all the time. I could barely walk. I had to use an electric cart to do grocery shopping. I was seriously considering social security disability.
After eight months on Rebif I gave myself permission to take a break. As each day passed without a shot I felt better and better. I stopped taking the shots and started exploring alternative treatments. I tried a number of treatments, including having my metal fillings removed, doing 24 chelation IV therapy treatments to remove heavy metals. I went to a health spa and tried a raw food diet and wheat grass which actually did make me feel a great deal better. I tried prokarin with no success. Then I found low dose naltrexone. It is now the only "medication" I take for my M.S.
Between cleaning up my diet to include organic fruits and vegetables and less red meat and the LDN I am able to work full time and walk without using a cane. I am not exhausted all the time.
My story is probably not typical. My M.S. was a sudden onset at an older age. But I think anyone with M.S. should clean up their diet. I would also suggest a trial of LDN.
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