Muscular Dystrophy

Engel   24 yers old, NL


The softball season had come to an end, but we carried on training through- out the summer months with a few adults and youth members of our club. One day, a man threw me a ball I couldn't catch- It was a very fast pass and thrown from too close by-All I could do was stretch my arm out to stop the ball from going out of bounds. It hit the last three fingers of my hand really hard and my ring finger was permanently damaged. After resting it for a couple of weeks, there was no improvement. A big bump appeared on the side of my finger and I was no longer able to make a fist. When the finger had taken the shape of something that resembled a swan's neck, they operated on it. They changed the place of the tendon, set it, and shortened it to keep my finger from dislocating.

I started feeling many small painful bumps. The stitches were supposed to dissolve but they were appearing under my skin. They operated again, this time to remove some of these stitches-The finger kept on hurting, despite the fact that they told me this was not possible-They operated again and removed more stitches. Since then, the pain has spread to my other fingers, my hand, my elbow, my shoulder, my right leg and my left hand and from there to my left leg.

My intention was to go to art school. I used to get ten out often for drawing at school and felt that my future path had been determined. I was going to become an artist,but now I knew this was no longer possible. At the hospital, they told me to stop exaggerating; it was just one little finger. I had to quit softball when I couldn't throw the ball anymore. The ball wouldn't go in the direction I wanted it to.

As a result of certain circumstances, I left home. I visited several hospitals. There were several hand splints to rest my hand, but none of them helped. They also gave me numerous medicines, none of which helped either. I have seen the most amazing specialists I have seen an anaesthetist, internist, neurologist, surgeon and orthopaedic surgeon.

I have seen them all and the only answer they could give me was,"Sorry, we don't know what you have and can't do anything for you"

I also went for ion therapy- They used certain sound waves to divert my nerves in such a way that they would no longer transmit the pain. It only worsened the situation. After that, they gave me sound therapy. They smeared a kind of gel on me and went over it with a device. I did feel that. I felt the sound enter my finger. The physiotherapist said that wasn't possible. He asked me what I felt. I described the feeling to him and he said, "Damn, you're right, but you shouldn't be able to feel this." Back at neurology, they told me that my nerves were overly sensitive.

Then my hand reddened and swelled. I couldn't hold anything or cut my nails. A specialist established that it was post-traumatic dystrophy. Another specialist said that I didn't have this. Yet another specialist said that I had suffered from post-traumatic dystrophy, but that it was cured and that this was the aftermath. And another one said, you do have it. I also didn't know what I had or didn't have. After many blood tests they still weren't able to prove that it was rheumatism. They can't really determine what I have. I have had a fever for almost six years now and my white blood cells are in constant battle with the 'wrong' cells.

I ended up with a rheumatologist who diagnosed fibromyalgia. When certain pressure points hurt they diagnose fibromyalgia, which is also called waste disease, because they don't know exactly what it is. or instance, when you have seven out of the ten symptoms, this means that you have this dis- ease. But no one really mows what this disease actually is. So I have fibromyalgia, along with the after-effects of post-traumatic dystrophy?

There are a few physicians, including family physicians that say, "I think you are suffering from an unknown muscular disease." In a way, they admit that their knowledge is still limited and that they don't really know what to do with me-

I have had many different kinds of medicines- Medicines that should not have caused allergic reactions, but did so. They gave me al3 sorts of medicines that were similar to morphine that I didn't react to. I used all kinds of medicines to counter inflammation, medicines that worked via my brain, so that the pain would become more bearable, but none of these really helped.

Then they gave me morphine and that did help. Normally, morphine causes nausea and makes you ill, but not in my case. Medicines that are similar to morphine made me ill. It was an opposite world. They wouldn't give me a regular prescription for morphine because I was too young and was still 'looking great.'hat 'looking great' has to do with it all I don't know.

Finally, someone came up to me and said: "Why don't you just take a few drags of a joint?" My first reaction was, "Bugger off!." Drugs? I was taught that every drug addict you see on the street started by just using marihuana. It wouldn't cause a physical addiction, but a mental one-And I assumed that you ended up only wanting more and more. Two other people came up with the same suggestion. Then I gave it some thought. I went to the library and read everything I could on medicinal cannabis. Only then did I try it and I quickly found that I could walk again!

All of a sudden,not only could I walk again but I could also ride my bicycle. I wasn't lying in bed anymore, something that really pleased my pets and they must have thought,'the missus is back' I really enjoyed life for the following two years, attempting and doing as many things as possible.

The doctors asked me what had happened and I said,"Oh, I've started using weed!" My family physician was against it at first, but he did try to get the costs covered by social services. He reasoned that using a natural product was better than his prescription of eighty grams of Valium a day. Social services agreed to this and tried to look for loopholes in the system. But they didn't succeed. The woman at social services really regretted not being able to help. She grew plants herself and was aware of their healing effects. The officials couldn't help me in any way.

After those two years of respite, the pain started getting worse again. I smoke two joints a day now. I used to smoke five a day. Now I only use it to help me get to sleep. I do have the feeling that marihuana helps a little, but not as much as it used to.

Using marihuana alongside magnesium enables me to go overcome con- stipation. When my body is very tense and I smoke, a kind of shiver runs through my body, because the muscles start relaxing. Sometimes these shivers are pretty severe- It's a shame that the effect doesn't last that long anymore. Marihuana helped me a lot during the past two years. I was really able to live life to the full- People wondered if I was stoned all day long, but I wasn't. It enabled me to do everything. Now it doesn't have the same effect. This is also because I have started smoking less. The only reason for smoking less is the price tag that comes with it. I can't pay for it anymore.

I have talked to the health insurance company, but they refuse to pay the costs. I did get a prescription for marihuana om the doctor. I have phoned the insurance company, written to them and sent them a copy of the pre- scription, but they won't cover the costs. When I am in pain, I want to get rid of that pain as soon as possible. The best thing to do is to smoke a joint. I can't stop using weed; it's the only thing that helps. If the insurance company would only agree to pay part of the costs I would still be better on. They assume that it is not an effective substance.

This is really not fair on the people who clearly benefit from this product. I think that they should take a look at why it works and investigate further.

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