Thursday, April 28, 2011

My story, part 3

You may have noticed that it has been awhile since I left off at the darkest point in my life. I tried a few times to continue the story, but I just couldn't get myself to go back there.

So I will just say that I spent about two years in the depths of despair. Any time anyone asked me how I was doing, I would burst into tears. I walked with a cane, and it was very tough to do anything because nothing on my left side was working. I needed my right hand to hold the cane and my left hand was useless.

I went to specialists, and came to the conclusion that medical diagnosis is not an exact science. I went to one rheumatologist who said I had rheumatoid arthritis. He prescribed a bunch of medication, which didn't help, so my family doctor just kept adding higher doses and more prescriptions for RA. Less than a year later, I went back to the same rheumatologist. Now he said I definitely did not have RA, but I did have fibromyalgia. I had researched fibromyalgia, and asked my family doctor about it, and he told me I didn't have it.

I got sent to a pain specialist. After she examined me, I realized that her speciality was inflicting pain. She told me to take a vacation. My doctor sent me to another rheumatologist for a second opinion. Turned out that he had the office next door to the first one, and had pretty much the same bedside manners. He didn't know why I was there when I had already been diagnosed by his partner.

I had been turned down for CPP disability benefits twice, but I kept calling and writing letters. They sent me to a rheumatologist whose specialty was fibromyalgia. He was great, very friendly, and very thorough. I asked him if he would take me on as a patient, but unfortunately he had an ethical problem with treating the patients referred to him by the CPP. He sent them a 12 page report (which I have a copy of). They got back to me and it seemed had only read one paragraph on the last page, where he said that he was not as concerned about the fibromyalgia as he was that I had an underlining neurological condition that he was unable to diagnose. He recommended some tests, but my family doctor would not order them because he didn't think they were necessary. So the CPP turned me down again, citing that their specialist was not concerned about the fibromyalgia, and nothing else had been diagnosed. 

I did get into a physiotherapy class at the Rehab hospital for patients newly diagnosed with fibromyalgia. I learned a lot, especially from the other women in the class. I had similar pain with them, but no one else in the class was having tremors like I had just started having.

I asked my family doctor if he thought it could be Parkinson's, and he said no - he was sure that it was not PD. After another year of me crying in his office because I was in so much pain, and I didn't think I could take care of my children, he finally sent me to the Movement Disorder Clinic in Winnipeg, where Dr. Hobson diagnosed Parkinson's. He started me on levodopa, the standard care med. It didn't help, although when he had me wean off to give Mirapex a try, I had so much pain that I realized that the levodopa must have been helping after all. Mirapex didn't help either. I spent about a year experimenting with various combinations of meds. 

Then, in February of 2005, I tried a combination of levodopa and Mirapex. I starting this combo on a Friday. On Monday, I was shopping at a Christian bookstore. I had left my cane in the van, using a shopping cart for balance. Suddenly I realized that I was walking, without pain!

Soon coming (hopefully): Walking and Leaping and Praising God!

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