Flail arm

[Double D]

Hi Shaun,
I had fasciculations in one arm and finger cramps for a year and a half before MND diagnosed in Oct 2006.
DD

[Shaun]

Hello HC & DD
Flail limb diagnosed in November, had two years of hand and shoulder issues before getting it looked at.
13 years , can I ask DD , how you are? My cons says I have slow progression , anywhere between 5 12 years
S

[Double D]

Hi Happy Chappy,
How are you doing.
I've had flail arm for 13 years.

[Ellie]

Sorry, I thought you were talking about cramps or spasms etc.

I agree with your Neuro that neither whey nor creatine will help. MND is not a muscle disease, but one which stops signals getting to the muscles in the first place.

Many people have great things to say about CBD oil.

As long as your breathing isn't too compromised or, if it is, the dose is small and you use NIV, Valium (diazepam) should be OK if your Dr prescribes it.

Smoking & drinking - honestly, at this stage, if they make you a Happy Chappy, why stop now after the horse has bolted, so to speak. Stopping smoking will probably cause you much stress, which can affect progression.

Keep doing your research on supplements - check out Theracurmin if it's not in your regimen already.

Good luck.

Love Ellie.

[Happy chappy]

And also to try an get some strength an energy back as I have flail arm .I am taking vitb12 Deanna protocol vit d and cbd oil. I am a smoker an finding it hard to even think about giving it up an i have 4 cans of carling lager each night. Does anyone know if any of these especially smoking an drinking will make mnd progress quicker . I am also taking valium

[Happy chappy]

Hi Ellie ..basically just try and slow down the progress of flail arm. I have mixed results as some info on internet states creatine does help but spoke to my neurologist
and he said it doesnt

[Ellie]

What symptoms are you trying to alleviate?

[Happy chappy]

Hi everyone can anybody tell me if creatine and whey help with the symptoms of mind please

[Sueb]

My Husband, Steve, was diagnosed with flail arm als in July 2014. He had been having problems with his hands for a few years and was diagnosed with carpal tunnel in both hands. Then in 2013 he had a rotator cuff injury repaired and his arm didn’t get any better. At the same time he had his carpal tunnel repaired on both hands. Again they didn’t get any better and his physio said there was something else going on and didn’t think he had carpal tunnel. He was finally diagnosed with flail arm ALS. The neurologist said it could stay in his arms or progress through his body which it did. He now cannot move his arms, hands or legs and his swallow is now affected and he has a feeding tube..

Sue

[Devonmaid]

My husband has flail arm MND. It started with fasciculations in his arms and then his right arm lost strength - he was struggling to lift it etc and then in December 2016 he was carrying 2 drinks at a party and nearly dropped one as his right arm wasn't working properly. It gradually got worse, his neurologist tried a couple of treatments for various possible diseases but none worked. He had to stop work and driving in June 2017 (was a bricklayer) and got diagnosed in October 2017 at the National Neurology Hospital in Queens Square. He gradually gets worse and now he is virtually paralysed. Apparently flail arm can have a slower disease progress than other versions of MND. His MND specialist said that this is not always the case and I suspect he knew Tony was a faster progression. Hopefully your progress will be slower. We have lots of input from occupational therapy, physios, speech and language etc and they all make things easier. Take care

[nunhead_man]

Hello Happy Chappy

Good evening everyone....nunhead man do you mind me asking have you or anyone else in here ever tried the tens machine ...I have tried having electric shocks but not sure whether that has made the muscle go quicker....Also has anyone tried anabolic steroids....I'm not sure if they would help but if it would give me some strength back i would try them best wishes

To both questions the answer is neither, because I am not sure either is sensible.

I am not sure the TENS machine will help much with those muscles that do not have a nerve supply, but I await anybody else who has tried it to see whether this might be the case.

And I suspect the trouble with steroids, if you mean the use as in bodybuilding, is that what it will do is build the muscles that still have a nerve supply and if this is one side of an opposing pair makes it more likely that you might do some joint damage because if the other side is not working there will be an unusual stress on the joint.

For example, if the steroids strengthen your bicep in your upper arm and your tricep does not work, I presume there is some risk of damage to your elbow joint

The advice I have had is to try and gently exercise the muscles that still have a nerve supply which involves some particular contortions, as in my case, I have often lost one side of opposing pair of muscles, but not the other - e.g. I still have the use of both my bicep and my tricep in my left upper arm, but the tricep is much weaker than the bicep and so I need to be quite careful how I exercise as the tricep cramps up very quickly, whereas the bicep is much more able to take exercise.

Warmly

[Happy chappy]

Good evening everyone....nunhead man do you mind me asking have you or anyone else in here ever tried the tens machine ...I have tried having electric shocks but not sure whether that has made the muscle go quicker....Also has anyone tried anabolic steroids....I'm not sure if they would help but if it would give me some strength back i would try them best wishes

[nunhead_man]

Hi Happy Chappy

Thank you - do keep posting here to help

how long have to been diagnosed with flail arm ....I was diagnosed in april...is it just your left arm at present

My arms do not flail at the moment as I have some musculature left in both shoulders and arms - my left hand is quite badly damaged but because my fingers have become stiff I can still push things using the strength in my upper arm and shoulder and contrasts things to my chest to carry them - a pint of beer, for example!

This has been going on since about May 2015 - at least, that is when I began to notice something.

My right arm is beginning to weaken in that my pinch grip looks a bit weird at the moment - I can pick up pins from the floor and open the buckle on cycling toe strap, which is my test - and it may be because I keep on testing I am exercising something I might otherwise have lost - but who knows.

As I have said elsewhere I think we need to move before I lose the rest of my arm function as the house we live in is not suitable for wheelchair use in my guess is I will need that in due course

[Happy chappy]

Thank you everyone who has replied to me ...nunhead man I agree with you i would also prefer my legs first then arms but alas I don't have that choice either...how long have to been diagnosed with flail arm ....I was diagnosed in april...is it just your left arm at present .... Best wishes

[Ellie]

Welcome to the Forum, Happy Chappy.

As Terry said, try keep your joints moving, even passively if you can't manage it actively, but don't exercise to the point where it aches or takes long for the muscle to recover.

Can you still feed yourself and do your personal care? And use a PC or phone?

Your OT should give you gadgets to help you maintain independence for as long as possible.

Love Ellie.