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Re: Hand Muscle Weakness

That's the good thing about websites like this; you realise that you're not alone really.

I've never noticed any tendency to be susceptible to changes in temperature? Neither the cold nor the heat make me feel any worse or better.

I certainly have good, bad and indifferent days but I've not as yet been able to ascertain why this is. Previous doctors alwas dismissed my accounts of these changes, my current neurologist is much more willing to listen, but he hasn't got any ideas either!

Just to illustrate my point, here in England the temperature has plummetted from 12C to 2C and I actually feel better today than I have all week!

Weird huh?!

Type of Myotonia: Becker's

Country: England

Re: Hand Muscle Weakness

I've heard that the muscle weakness is common to Beckers, but I have Thomsen's and I get muscle weakness in my hands and arms quite a bit.

Type of Myotonia: Thomsen's

Country: Simi Valley, CA

Re: Hand Muscle Weakness

Hey Pete
It is an incredibly difficult problem you mention here. These problems are a few times a year when they hit very hard and almost the smallest thing becomes a huge problem.
I have tried to change my diet, did not help. Had blood tests during the periods where the problems are worst, every time I have had low blood sodium levels. Without anyone knowing about it may be the cause.

The reason.
There will be referred to changes in temperature, do not completely explain it, but the weather must have an influence of one kind or another. During the last week we went from 17 C still air to about 2 C and very strong winds that have been a little bit of snow. Think closer to the kind of drastic weather changes. Again hard to say.

Then I have another teAori, adrenaline and stiffness of all muscles, causes that we can not move from one place to another. Since the stiffness occurs so quickly, just a stop on the very very short time means that we become as frozen to the spot. Then it means to go places where no security is crossing a road, walk across an open space means that adrenaline aggravates the problem much. A vicious circle.
I walk with a cane, it does not help in the periods walker can not I use a walker because my balance is gone during those periods.So I put a counter question how you combat that adrenaline takes over complete control of a man. ?

Kjeld

Type of Myotonia: Thomsen

Country: Denmark

Re: Hand Muscle Weakness

Kjeld,

If your blood tests consistently show low sodium levels then you probably have a condition called SIADH or Syndrome of Inappropriate Antidiuretic Hormone Secretion. This is an overexpression of the pituitary hormone vasopressin. It can be aggravated by adrenaline output because that in turn increases insulin. And it can defitely make myotonia worse.

It can be caused by different things, but the main ones to look for would be hypothyroidism, head injury (which can damage the pituitary) and side effects of drugs. In fact carbamazepine (Tegretol) is one of the drugs that can cause it.

If you do a search on SIADH you'll find lots of information on testing and treatment. Usually an endocrinologist is the doctor you would see to diagnose and treat it.

Your comments about the wind changes made me think of some articles I had read years ago about the negative health effect of high levels of positive ions. This is often seen in the winds that precede a weather change. There was quite a bit of research done in Switzerland years ago on what they call the Foehn winds. You may have something similar in Denmark. In the US we have the Santa Ana winds.

I hope you can find a doctor to investigate the low sodium (hyponatremia). It's very important to get it documented so that you don't get fluid overload from IVs when you're hospitalized for injuries or surgeries.

Jan

Type of Myotonia: Thomsen's

Country: USA

Re: Hand Muscle Weakness

Hi Jan.
Sorry for the late reply, but we have just a couple of holidays here and now. My saltbalane under normal circumstances, is fine. Only when the stiffness comes into eksrem degree drops salt balance too. It was actually by chance that I found out I have low salt Blance. From now on I will get regular blood tests.

I'm still unsure about the weather are to blame for the problems that I sometimes get. The last days I have had it very well. It will probably never be solved.
Much thanks for your detailed response.

Kjeld

Type of Myotonia: Thomsen

Country: Denmark

Re: Hand Muscle Weakness

Keldj:

MC aside I'm not the fastest person in the world. If I did not have MC, I still probably would not be able to dance, skateboard, or be particularly nimble in any sense, and this is probably due to a neurological issue unrelated to the MC, but I like to think of it like this:

I have the perfect cerebral cortex, aka "stability control system", for the body I got.

A normal stability control system + bad MC = falls.
People take off running or try to do some mundane yet complex move, and fall flat on their face.

Despite the severity of my condition at certain times in my life, I've only fallen once due to the MC, and it was entirely the cat's fault.

There have been very few occasions where I've had a sudden increase in the MC and didn't know it was going to happen, and even in those instances, I was not doing anything death defying like jumping on to an escalator without timing my move, because that's just beyond my capabilities anyway. So I was prepared and nothing bad happened.

The adrenaline does make your MC worse but let's say you weren't nervous when you were about to cross the road, so you felt fairly mobile, but something happened in the middle of the road. Maybe a car comes speeding down the road and can't stop in time because it's iced up. The second you realize that the car isn't going to stop, and try to move suddenly, whether the adrenaline has taken affect or not, because your myotonia seems to be on the more severe end of the scale right now anyway, you are probably going to lock up, and you won't be able to get out of the way.

So when you get nervous in situations like this, it might actually be a good thing because it ensures you are not deceived about your actual abilities to move, and helps prevent you from putting yourself in what will turn out to be a dangerous situation.

So your nerves are keeping you safe because if you lock up so badly that you can fall in place with the adrenaline, you are probably still going to lock up if you try to move suddenly without the adrenaline.

My advice to you would be to wear an orange vest while out walking, try to cross at gaurded crossings, and when you can't cross at gaurded crossings, make sure cars are a long way off before you try crossing the road.

Type of Myotonia: Becker

Country: USA

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