FSHD Cure?

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FSHD Cure?

Postby AL9XM » 01 Mar 2011, 18:16

Hi All,

This is my first post on here, so firstly hello. I am an FSHD sufferer and in the last year my condition has progressed rapidly :( I'm 28 male, was very fit and active.

My condition is rapidly declining and driving me to look for help. Is there anything out there known to help slow the progression of this? I will try anything so any suggestions are welcomed.

I look forward to hearing some responses.

Thanks in advance
Alex
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Re: FSHD Cure?

Postby sar78 » 02 Mar 2011, 13:33

Hi Alex,

Welcome to TalkMD :)

We have quite a few members with FSHD. It might be worth doing a search for FSHD to find previous posts if you haven't already. I am sure others will chime in, in response with their suggestions and experiences.

Best wishes

Sarah
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Re: FSHD Cure?

Postby kelvidge » 02 Mar 2011, 15:08

Hi Alex,

I'm the Research Communications Officer at the Muscular Dystrophy Campaign and I just wanted to point you in the direction of a couple of articles. Unfortunately there is no cure or specific treatment yet but there has been considerable progress over the past couple of years which means that at last scientists are beginning to think they might be able to come up with a possible treatment. The genetics of the condition are very complicated and it took scientists a long time to figure out what was going on. You might be interested in reading this:

http://www.muscular-dystrophy.org/research/news/2979

In the meantime there is a lot you can do to manage your condition and I'm sure others on the forum will be able to give you advice on this from personal experience. An article published recently about standards of care for FSHD might have some pointers in it for you:

http://www.muscular-dystrophy.org/research/news/2481

In particular they say that exercise can be of benefit for people with FSHD; improving fitness and strength. It is recommended that 30 minutes of aerobic exercise (such as cycling or swimming) should be undertaken at least three times per week if possible.

Hope this helps, please get in contact if you have any more questions.

Best wishes,
Kristina.
"There are no stupid questions, just stupid answers"

Kristina Elvidge, PhD
Research Communications Officer at the Muscular Dystrophy Campaign
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Re: FSHD Cure?

Postby Morgan » 15 Apr 2011, 10:44

Hey Alex, not sure if you'll pick this up as you wrote it a while ago.
I,m in a similar boat, 32 and feeling the effects of FSH more and more.
Although there is no cure there are plenty of tricks to keep you going, some of them may cost but are well worth it.
Currently I'm learning the Alexander Technique which teaches you to use your body and muscles in the way they were meant to be. It's a little tricky as we have muscles that either don,t work or they are doing jobs they shouldn't be. However AT is proving beneficial as it takes a lot of additional pressure of limbs and their muscles.
My other two tips are swimming, the best way to keep the whole body moving, and my creme de la creme is a stick.
That's right a stick, i have a broom handle. This allows me to raise my arms in a way I can't do on my own. It helps stretch them out and feel normal.

The important thing is to keep them moving. Movement is essential as the muscle will seize up before long.

Hope this is useful is some way or another.
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Re: FSHD Cure?

Postby AL9XM » 16 Aug 2011, 15:54

Hi All,

Thanks for the replies, does anyone know how the reseach is going into DUX4? Also does anyone have ideas of how to neutalise or reduce the toxic protean levels that result as part of the DUX4 issues? Or if this is even viable?

Morgan, not sure i fully understand what you are doing with a stick? Do you mean you use a walking stick?

ANy more info will be greatly appreciated.

Thanks
Alex
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Re: FSHD Cure?

Postby ranald » 16 Aug 2011, 16:14

@AL9XM

I admire your positive outlook here mate, i guess you are one of the "glass half full" kind? I wish i wasn't so pessimistic about the future.

I suppose everyone has a different outlook but i think it is vital to accept, there is currently no cure for our disease.

I thought hard about commenting on this thread, i would never wish to hurt or offend anyone. My only concern was for you having your hopes crushed.

Mods please accept my apologies in advance, if i have posted inappropriately.
Common sense is not so common.

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Re: FSHD Cure?

Postby LoneWanderer » 16 Aug 2011, 22:37

AL9XM wrote:Hi All,

This is my first post on here, so firstly hello. I am an FSHD sufferer and in the last year my condition has progressed rapidly :( I'm 28 male, was very fit and active.

My condition is rapidly declining and driving me to look for help. Is there anything out there known to help slow the progression of this? I will try anything so any suggestions are welcomed.

I look forward to hearing some responses.

Thanks in advance
Alex


Hi Alex

There is no cure as of yet but is some amazing work being done every day; look at the recent scientific breakthroughs with Duchenne md, which I know wasn't a cure but still very encouraging. I know people will think me cheesey but I think we have to always have some hope
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Re: FSHD Cure?

Postby AL9XM » 17 Aug 2011, 13:23

Ranald you have not offended me at all, so no problem. I am very positive in everything I do.

I don't think I am deluded, compared to other medical challenges FSHD does not seem like the most difficult to investigate. I have spoken with Dr's and specialists in this field and it seems as though if there was more funds available this is something that could be cracked, this isn't a question of a lack of biological understanding. That frustrates me a little.

I see things like £363+ million of tax payers money being spent by the government on rolling out better broadband to rural areas! If there is that kind of cash flying around for things like broadband up mountains I'm sure a bit more should be diverted into medical research.

Before something can be improved it must first be understood, and to understand FSHD seems to be a matter of money, or lack of it. I know developments are happening but thousands out there including me do not have the time to wait.

I know i'm just spouting off here but surely someone must be asking for more funding to go into this area of research???
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Re: FSHD Cure?

Postby AMGmod » 17 Aug 2011, 13:51

Alex, you might find this post and thread of interest Encouraging News ...

I along with many others would likely agree with you that regards the Government cash it can be found for what they want or what buys votes ie. overseas aid, rural broadband [but as I am one who will benefit from this I am quandried], I guess the old adage applies yo cannot please all of the people all of the time, however I'd settle for being please some of the time, lol.
"I'm always the animal, my body's the cage"

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Re: FSHD Cure?

Postby ranald » 17 Aug 2011, 22:34

Hi AL9XM,

I totally agree with you regarding the lack of money being diverted to MD research. I would have to take issue with your example though. We have a third world broadband coverage in this country and will never encourage businesses to set-up in our rural areas, unless we have suitable, high speed broadband.

Back to the lack of money in MD research. At last year's Scottish MD conference, we were told that in that year, the MDC pulled in £5m but The Donkey Sanctuary got over £20m! That is a pretty depressing comparison i think.

If we consider that a GP will probably only encounter one MD patient in their career, it is hardly surprising that little research is done, compared to cancer, which effects almost all families in the UK.

I have check out the percentage of people who suffer from Becker MD (my one) and it is 3-6 per hundered thousand, whilst 80% of men get Prostate Cancer by the age of 80. How can we ever compete with Cancer charities, who get the lion's share of donations?

That being said, there is still a hell of alot more that can be done, to raise the profile of Muscular Dystrophy.
Common sense is not so common.

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Re: FSHD Cure?

Postby AL9XM » 25 Aug 2011, 12:14

AMGMod - Thank you for the link and good luck with the broadband.

Ranald - I wasn't suggesting they do not improve the broadband situation as I appreciate the innovation that could be born from better coverage, I was using that as a relative example similar to how you have referenced the donkey sanctury. I also appreciate your balanced view on why more goes into research for more common conditions.

I think taking everything into account i'm sure we would all agree that more funding into the research of muscle desease would be a good thing for everyone it affects.

Does anyone have any millionaire mates that fancy blowing some of their cash on a good cause?! Failing that can anyone tell me what programs are in place to raise more funds for muscle desease research?
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Re: FSHD Cure?

Postby baroquetexas » 19 May 2012, 20:11

I was diagnosed with FSHD genetically at 40 although footdrop started at 39. I would suggest speaking with neurologist
about treatment with CoQ10 with success transitioning to Idebenone which is a man made imitation of CoQ10. Dosage is large and working with my doctor in 5 months I have seen easing of the effects. Idebenone works for some and not others but I was fortunate that I see it working with me. My last visit we doubled dosage and with the timed release I feel more energy through the day with stability in my overall walking. The CoQ10 seemed to plateau with me and with lack of timed release energy levels did not stay stable. A common effect was falling asleep in the middle of physical therapy exercises after a long day of work. The CoQ10/idebenone by no means is a cure but in some cases such as mine can help mitigate the effects of FSHD. I would also suggest requesting physical therapy sessions to strengthen the muscles not effected by FSHD. I am able to lift my arms above my shoulders with some effort and have better overall stability. You will need to keep dedicated to a daily routine but it has made FSHD impact a little less in my normal life. Prior to this routine I had a terrible right slant with a bad limp due to the footdrop. My limp is less and I do not lean as much now. Hope this helps. I also chose not to provide dosing as this really depends on the person and needs to be tracked by your doctor. In addition I also started to watch what I eat and got into natural juicing along with a whey supplement which was not suggested by my doctor. Just trying to provide everything I am doing in my routine.
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Re: FSHD Cure?

Postby ranald » 19 May 2012, 21:16

I have been swimming three times a week since September last year, it is the only exercise i can do reasonably well. I find it difficult but i guess i feel a slight improvement in my overall strength and..er, flexibility. :?
Common sense is not so common.

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Re: FSHD Cure?

Postby northernlight » 24 Oct 2013, 01:37

Hi I am new to this so apologies if I misstep. I have FSHD. I started taking COQ10 250mg/day in March. To my shock I suddenly realized after 48 hours that I was more stable on my feet. Since then I have increased the dosage to 1400mg/day. The improved stability has remained and I cannot detect any other weakening which over 7 months is unprecedented for me. I don't feel I have built any muscle but rather it feels as though what I have works better. COQ10 I understand is the energy of the cells and that fits with what I am experiencing. I spread the dosage out over the day and take with fats of some kind that I understand the body needs to absorb it. I was a one person trial with a rehab hospital for salbutomol 15 years ago and this is very different. I have not experienced any side-effects but it is clearly helping. I have good energy all day and evening now and can do more tasks than I could before. Emptying the dishwasher used to exhaust me but no longer. As I said I don't think I have more muscles but everything is just that little bit easier and the energy is way up. What is nice is the energy feels completely natural not like a caffeine shakey high for instance.
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