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Re: Hand Muscle Weakness

Hi Jenna
Many thanks for your response to my post. You did a very good example, having to cross a very busy street. I could a few years ago, but after a couple of pretty powerful experiences, then it's over without help. Now's the difference between the two of us, you fall like a cat, I as a tree. I can not move a muscle in my body when I get those modes where everything locks. Sounds a bit strange but it's not the fall or impact / concussion which is the worst. But the 2 - 4 seconds where you are and sways from one side to another, and by now I fall.

Therefore, the body responds very well naturally. Pumps adrenaline into when and if by now there is the danger that can happen. The only problem is that if it happens all sorts of places, so I become locked in the wrong places. This is what is happening with me and especially in the bad periods.

I am well aware that everything takes time, my life changed radically in 2005 and only the last two years, I try to build it again.

Physiotherapy has been a great help after I've read about experiences here.



Kjeld

Type of Myotonia: Thomsen

Country: Denmark

Re: Hand Muscle Weakness

Kjeld:

You must have misunderstood. I fell like a tree because of the cat! He sat down behind me, and not knowing he was there, I stepped backwards on to his paw, he screamed, and reflexively I lifted my foot off of his paw, lost my balance, locked up completely, and fell.

But that was when my myotonia was very very bad. If I did happen to lose my balance today, I might be able to regain it and avoid falling, and if I did fall, I'd be surprised if every muscle in my body locked up like it did that one time. I mean, I completely locked up. I've never managed to knock myself off balance though.

But yeah, it is that moment on the way down to the ground where you realize you can't move a single muscle that's scary isn't it! Scary and surreal.

Type of Myotonia: Becker

Country: USA

Re: Hand Muscle Weakness

Kjeld,

I do not think that there are any easy answers.

I use a cane too when I am outside walking and like you I still have problems, when the MC is at its worst and the muscle weakness is really bad, well the cane does not seem that useful.

I try to avoid certain situations. If I have to cross a road then I will use a controlled crossing point and not rush. If there is no such crossing point then I find a place with plenty of visibility, it it has a traffic island in the middle all the better.

If I can I will cross the road with someone else too.

When I am out I look for obstacles all the time. It has made me very observant and I find that this is the best defence against accidents.

Type of Myotonia: Becker's

Country: England

Re: Hand Muscle Weakness

My body pumps exsessive adrenaline under situations...such as going places and most anything that i worry about..and i also freeze and am paralysed i know what you are talking about because this is my biggest problem...for my safety and others cold weather also

Type of Myotonia: THOMPSENS

Country: U.S.A.

Re: Hand Muscle Weakness

Hi, I have been struggling with the stiffness of my legs and I have been locking up & falling down as stiff as a board, It does make you scared of going out to cross roads or walk in open spaces, I dont have Dr's here that know anything about it, a walking cane really isnt enough for me either, a shopping trolley is the best.
Has anyone taken anything that helps?

Type of Myotonia: Thomsens

Country: Australia

Re: Hand Muscle Weakness

Jenny,

The most effective medication is mexiletine (trade name Mexitil) but it is not available in Australia. You can get it from CanadaDrugs.com with a prescription but you would have to pay for it yourself.

The other medications you could ask your doctor about trying are flecainide (Flecaine), lamotrigene (Lamictal) and acetazolamide (Diamox).

If you want to try alternative treatment I recommend the amino acid Taurine (1-2 grams per day) or Licorice Root Extract (1-2 capsules a day). It also helps you reduce sugar intake and avoid high potassium foods. You can check my diet page on the website.

What you mentioned is very common and unfortunately the more anxiety you have in a situation, the worse the myotonia gets because of the increased adrenaline. You might want to try a rolling walker - you can get a type with four wheels, a seat and a basket. They're very lightweight and they are much more secure than a cane. I used one for a while when I had heart failure and it was great. Most people have a hard time giving in to using an aid like that, but it can improve your quality of life so much it's well worth it.

Jan

Type of Myotonia: Thomsen's

Country: USA

Re: Hand Muscle Weakness

Hi Jenny
A shopping cart has been the biggest help to me for many years when I'm out and buy goods. The more and heavy things that come into the wagon, I have the easier time getting around. During the periods where I do not have large stiffness problems, so everything is very easy for me.

Jan
you mention just right a walker, I'll have one at a time. Have been meeting with two occupational therapists. They were both quickly realized that in my case it was probably not the solution. If I have to have a walker, it must be extra high. I am 197 cm tall. There must be fitted with extra weights on the walker up to 10 kg. Otherwise I fall over with the walker. But then it makes quite a few problems if you are going up along sidewalks and elevations. In a short time I have a new car, it is arranged so that there is room and easy access environment for a walker.
But for the vast majority would a walker be a very good thing. Try it out

You write it right that it's fear and MC together that blocks us who suffer from it. The big problem is how to get out of this vicious circle. From what I have learned that there is not any medicine that can help. Got a couple of years ago Lyrica, which might be the solution to the problem. Had no effect.
Kjeld

Type of Myotonia: Thomsen

Country: Denmark