Myotonic Dystrophy

SO ******* tired

So I live with the almost constant pain of Myotonic Dystrophy. Like I have just completed a marathon run. I live with the limited mobility. I cope with the fear of the future for myself and loved ones.

The thing I struggle with. Above all else is the fatigue. The almost constant feeling as though my brain is in a fog. The unstoppable falling asleep in the early evening no matter how hard I try to stay awake. The superhuman effort to make a cup of tea.

IT IS NOT A CASE OF NEEDING MORE SLEEP.

It is an invisible part of MD that people who don’t experience fatigue find hard to understand. I would love to have an extra-long sleep and wake up fresh and raring to go. This has not happened for many years now. I have little hope it will improve any time soon.

Some sufferers of Myotonic Dystrophy have been prescribed Modafinil: a drug used to combat day time sleepiness. Results have varied but a good number of people have described it as nothing short of life changing. The tiredness has gone. It is not a cure and will only work as long as you take it.

I want to try it. I have been to my doctor. Who would not make a decision and referred to my specialist. Who to my surprise did not seem able to make a decision either. She passed it on to another doctor who I have never met. He refused my request. Because “it is not usually prescribed”. What kind of answer is that?

I will say it. I think I know better.

A medical degree in this country takes 5 years. Myotonic Dystrophy is barley covered if at all. There are very few certified specialists in Myotonic Dystrophy. Especially here in th UK

I, on the other hand, have studied Myotonic Dystrophy for 13 years. Specifically Myotonic Dystrophy. Nothing else. More than twice as long as it takes to gain a medial degree. Not only that, I suffer from the condition. I know exactly how it feels. I hare researched Modafinil. I knew the risks, possible side effect and of course possible benefits. Quite frankly I think I know what I am talking about. This issue is not over. I have a meeting with my specialist where this issue will be brought up.

But right now, I feel so ****** tired.

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UPDATE
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So I met with my specialist who was reluctna to even consider my request to presribe me with Modafinil. "We don't usually prescribe it for that". I would not let it go. Finally to get me to shut up she said "have a heart test and if you can find one paper supporting Modafinil for Myotoinic Dystrophy I can reconsider" . Her llok told me I wouldn't find any papers.I had my heart test which came back fine and then I sent the "specilaist" 19 papers and studies supporting the use of Modafinil to help in people with Myotonic Dystrophy along with the most prertinent quotes and the URL to the speicific paper.Another emil saying I knew the risks and accepted them and then...

MODAFINIL WAS FINALLY PRESCRIBED!

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BUT THE STORY DID NOT END THERE
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This is a medicine that i will need as a repeat prescription. Possiby for life. This comes from my local GP pracice.(It is not for my specialist to write repeat prescritions forever) I thought this would be a fairly easy process with a letter from my specialist. No. My local GP practice refused poin blan to faclitate this move. No ecpalnation. No real reason. We don't know enough. We don't care could be another way of seeing it. This went on for a year. My specialist writing me new prescritptions and writing to my docter to take over. "No" they chanted.

I HAD TO ACT

I sent the letter simlar to the one above. I challanged my doctors to refute my speiclaist and every single one of the papers that I sent them. In detail. With evidence showing why every study was flawed. For every single paper

A little while letter I got a text (not a letter) saying that after having a meeting with all of the doctors and managers they have now agreed to my request for a repeat prescription. That I has asked for a year ago.

Ths first batch arrive yesterday. Diffrent brand to what I have been taking buy I am sure it will be fine.

But why such a battle?