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Re: Adult Onset - Type IV |
Dear Janet
Sorry I dont have any answer to your question but it is a subject which gives me cause for concern.
My husband Kevin who is 61 was diagnosed last year
and we have little more information than we have received from his consultant and what I have found on the net,the latter being the most informative. He is most anxious to find a fellow suffer as he feels that he is the only one. On the basis of your comment on virus infections I am trying to persuede him to have the flue injection because it seems logical that you will be hit twice as hard as a non sufferer. I would love to hear from you and I should like to know if you returned to the same standard of health on recovering from your virus. Regards Carole |
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Re: Re: Adult Onset - Type IV |
Dear Carole,
I'm not sure from your note if Kevin also gets this sort of effect following a virus - does he? I've had a range of different effects, varying in intensity. The worst was last January where I couldn't walk at all for a week and it has taken from then until now to attain about the same plateau I was at previously. Then, I had a virus in August but the effects only lasted several days. It's all so unpredictable! I did finally ask my doctor for a flu injection and I'm keeping my fingers crossed! What else can you do? All the best - Janet |
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Re: Re: Re: Adult Onset - Type IV |
| Dear Janet, Kevin has not as yet had a virus. What he has experienced, two weeks ago we had been doing some physical work in the garden ( Kevin's main problem is with the lifting muscles in the right leg he can only walk a little with sticks but can drag things around & lift things while sitting down - his arms are unaffected)He was tired by this effort, which by normal standards was very little but after resting for the rest of the day we went for a drink in the evening where he had a little more than usual. When he got up in the morning he found that his left arm and leg were feeling numb and very weak. He rested for the next couple of days and the arm went back to normal. Slowly day by day he has improved but is still not feeling as well as before that day. I think that the alchohol had a damaging effect on top of the over work. What do you think? Regards Carole |
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Re: Adult Onset - Type IV |
| I think rest is essential and - I regret - no alcohol - in fact anything that reduces your abilities such as a virus or alcohol is bad news for SMA type IV. I have to lie down for around 10 hours a day to keep up the other 14 and always try and sit in a really comfortable chair. |
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Re: Adult Onset - Type IV |
I am the same age but as yet haven't been affected by a virus. If I am tired I tend to feel 'wobbly' - it isn't my legs that are weak it seems to be the muscles in the trunk of my body causing it.
Everyone with SMA seems to have different symtons.
I have a problem lifting my arms but manage to walk and do most things. I would be interested to hear from anyone with adult onset SMA just to compare notes.
I was at first diagnosed with another disease, and have only had confirmation that I have SMA about 5 years ago although I had symptons for many years. |
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Re: Re: Adult Onset - Type IV |
Hi Hazel -
I'm Janet and I'm the one who started this particular discussion more than a year ago. It's funny, because about 25 years ago, I had problems with my right arm - so weak I could not sign a cheque! I had all the tests but no diagnosis and then it mysteriously got better within about 5 years! Then, the problem with my left leg began. It is all very puzzling. Since I last wrote, I've had a wonderful experience of physiotherapy with a woman who knew about neurological problems and I've been going to the gym regularly and I've lost some weight. My walking has improved so much that I now only use a stick and not a 3 wheeled walker! I'm definitely trying to prove the doctors wrong.
What medications are you on for this? I researched gabapentin on the net and got the doctor to prescribe it and I think it also has made a big difference. I had lots of twitching and cramps and that's all gone! Whatever helps, right?
I'd love to hear from you.
Janet |
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Re: Re: Re: Adult Onset - Type IV |
Hi Janet, nice to hear from you.
I have never met another person with SMA but I have spoken to one or two by 'phone but their symptons were quite different to mine, so I can only presume that everyone if affected in a different way.
As I mentioned, it took a while for me to be diagnosed with SMA. My problem started in 1983 - quite a long story, but basically I was diagnosed as having polymyositis. The Polymyositis Support Group were looking for people to take part in some trials and I offered to take part as I was able to travel to London. It was only then that the Doctor dealing with the research examined me and said that he didn't think I had polymysitis. He referred to me another hospital for tests (a whole week spent as a patient) and I was diagnosed SMA - this was in year 2000 - quite some time later!!
My symptons are that I cannot lift upwards - even holding a glass of wine is impossible unless I use my other arm to help! Both of my arms are weak but in different ways. I also need to be near a rail if I am coming up or down stairs as I feel I could fall as my balance isn't too good (I can't stand on one leg). However, I have no pain at all and feel healthy in general.
I stretch my arms (lying on the floor) but do not really do physio - I did for a while but I got tendonitis in my left arm, probably from over doing it.
I may have got it wrong, but I was under the impression that once your muscles waste through SMA you can't build them up?
Have you had the genetic blood test done?
It is only recently - and I mean in the past few weeks - that I have noticed a bit a 'wobble' sometimes when I put one foot down. I am hoping this doesn't mean I am getting worse. It is hoped that because I have had this for so long (although I MAY have had polymyositis at one time too) I won't get alot worse.
I don't take any medication - again, I didn't know there was anything you could take. I will check out gabapentin on the net.
The other thing I found through talking to one or two people on the 'phone was that they were not slim. I presumed that my skinny arms and legs were because of muscle waste!
Do you live in the UK?
Look forward to hearing more - any tips would be most welcome.
Hazel |
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Re: Re: Re: Re: Adult Onset - Type IV |
Hi, I was told that there is very little treatment for SMA type IV. I take vitamin supplements - for all round health - and creatin - which is a muscle building treatment. Nothing really works as I am getting weaker as time goes on. My weakness started in the right leg and moved on to my left leg and arm. I now use a power chair at work and stagger from chair to chair at home. My balance has virtually gone, but a little support enables me to stay upright. I use AFOs (splints) to keep my foot and ankle in place when attempting to walk.
I was told that once the nerve cells die they never return, so I do not believe there is any chance of recovery. I have had a genetic blood test but with no positive results, I appear to have nothing wrong with me! I have had every blood test going, spinal fluid taken, urine samples by the bottle full, but nothing significant was ever found. I was also told that what I would progressively get worse at roughly the same rate. 15 years ago I had no symptoms at all so the outlook is not too good.
In fact I had no symptoms until I was 40 years old, when younger I used to do cross country running and once walked 54 miles in one go. Now I cannot walk more than 5 metres without big problems!
I have constant aches in both legs, which often get very cold and I can easily 'pull a muscle' or trip up on uneven ground. There is a balance between physical exercise and resting, which can be difficult to manage. Too much exercise can result in weakness and too much rest can result in poor muscle tone and wobbliness. I keep my legs warm at all times and have even considered silk socks, from ski shops, to help with heat loss.
My advice is to keep moving as much as possible using simple physiotherapy exercises - I like Tai Chi, sitting down - and limited walking on level surfaces if possible.
Peter H |
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Re: Re: Re: Re: Re: Adult Onset - Type IV |
Hi Peter -
It's great to hear from other people with Type IV. Where do you get the creatin? I take folic acid and vitamin B12. Who knows if any of it works, but I'm too superstitious to stop taking any of it. I've found my splint to be indispensable. I remember when the doctor first asked why I wasn't "splinted" I wanted to cry, but it's been great. I too have a balance problem but I always wondered what the connection was. Thanks for the advice and all the best.
Janet |
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Re: Re: Re: Re: Re: Adult Onset - Type IV |
hello, I am new to this site, and it seems this was written quite a few years ago, however, I am a 28 year old female and have experienced similar symptoms (mostly in my legs). What I wanted to point out was that I have no official proof of having SMA, except of the symptoms. There must be some other mutation which is causing this. Or a way to confirm the anterior horn cells are deteriorating in our spines. A friend of mine also recommended Tai Chi...I think I will try it.
Anyway, I think treatment lies in Stem Cells, although there is a lot of controversy with this topic...even Stem Cells from adults, which I am pretty sure no one has an issue with. |
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| Mon May 28, 2007 11:03 pm |
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Re: Re: Re: Re: Adult Onset - Type IV |
Hi Hazel -
As you say, it seems to affect everyone differently. I had the genetic blood test but it was inconclusive. I've had the nerve conduction tests and I've been waiting over a year to have them done again. I wear a splint on my weak leg since I have a dropped toe and frozen ankle and I think this has been decisive in helping me to stop falling. This weak leg is considerably thinner than the other - partly through compression aedima from the splint and partly through what I assume to be muscle wastage. The consultant told me I had "no muscles" left in my legs nearly 2 years ago - I said, so how am I still standing? He laughed. I think it's a good question. I too was told that you can't re-gain the muscle you have lost, but it seems to me from my experience that I have been able to develop the muscle which is left.
Yes - I do live in the UK - in Glasgow. My e-mail address is: (removed! - webmaster: please would contributors let me know if you wish to pass on email addresses to each other using the link at the bottom of the page and I will be happy to oblige!) if you would prefer to communicate directly.
Good luck! All the best -
Janet |
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Re: Re: Re: Re: Re: Adult Onset - Type IV |
| Hi Creatin can be bought from places like Holland & Barrett or other health food shops, it can be expensive but you do get offers on it sometimes. I take 5mg a day, so a pot of it does lasts months. I do not know if it does any good but I too do not like to stop just in case. Peter H. |
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Adult Onset - Type IV |
| Hi Forgot to say that I also take vitamin B12 and folic acid as it was suggested it might help. I am wondering whether to have the flu jab too, I suspect if I did get real flu and suffered muscle pains I might be laid low for a long time. I once taught a student who had muscular dystrophy - not quite the same I know, but similar effects to SMA - who could just about walk until he caught flu, after which he was wheelchair bound. Peter H. |
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| Wed Nov 12, 2003 10:05 pm |
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Re: Re: Re: Adult Onset - Type IV |
| Hi, Janet. Regarding your post back in 2003, you've said that your physiotherapist helped you improve your walking. Is there any chance you can describe to me what sort of exercises you were doing? Thank you in advance. |
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Adult Onset - Type IV Physio |
Hi
I attend the Neuromuscular Centre in Winsford Cheshire for physiotherapy for Spinal Muscular Atrophy Type IV. The treatment comprises four parts:
Stretches given by the physios, which is mainly for the hamstrings, achilles tendon, calves and outer leg muscles but also includes work with shoulders arms and hands.
Standing, strapped to a tilt table, to stretch the hamstrings further, I usually can manage about 30 minutes standing.
10 minutes on an assisted pedaling machine to keep the ankles loose.
20 minutes on pressure wellingtons to help with circulation.
These exercises taken fortnightly have greatly assisted me in keeping mobile. It must be emphasised that the exercises are not a 'cure' and they do not reverse the effects of the disease - which continues as ever with my strength gradually decreasing as time goes on. Without them and the AFOs I wear I doubt very much whether I would be as mobile as I am now.
Peter H |
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