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njm
19th January 2015, 15:41
.Dear Forumites:

I am interested in comments from anyone diagnosed as PLS or originally diagnosed as PLS. I have been told I probably had PLS and it has now progressed onto ALS. I had sore and cramping leg and arm muscles for years but no weakening or spasticity. In 2003 I started experiencing leg spasticity which progressed quite quickly. So I am interesting in comparing notes on PLS symptomatology and progression.

Regards

Charles

njm
19th January 2015, 15:44
Forumites:

Oops. An error in my previous mail. It is 2013 not 2003.

Charles

Terry
19th January 2015, 22:06
Hi Charles;

I was diagnosed with PLS and a little ALS, it's been progressive for me and all parts have weakened and many stopped working altogether. I breath quite well and eat normally ish. I get around a gym and can just shuffle along with a walker but I am safe.

Regards Terry

Explorer
19th January 2015, 23:33
Hi Charles, I was diagnosed with PLS in May 2014 but I started having problems with walking and falls about 6yrs ago! Now I can't walk and am in a power chair all day. My legs have started swelling in the last 3 mths. Also one month ago I had to start using a Bipap machine at night to help with sleep apnoea and weakening chest muscles!
Thankfully so far my hands and arms work reasonably well, and my speech and swallowing are ok.
My lower back is very weak and I had to have a profiling bed to help me move about and get comfortable at night.
I can stand for a few seconds when holding onto grab rails but it hurts my back and my legs immediately go into hypertension!
If you want to you are welcome to pm me. All.the best. Gwen

Terry
20th January 2015, 12:40
Charles PM this to me and I have been given his permission to post it:-
"Terry:
I had muscle problems for 20 years. Still cycled, ran, walked and played squash. But my legs and arms cramped easily and fatigued easily. My neurologist says I have 90% PLS and 10% ALS. How did you progress? I am still walking with a stick. I am wondering how I will progress (as we all wonder). How did things go for you? Sounds like we are very similar diagnostically. Your comments will be greatly appreciated.
Charles"

Terry
20th January 2015, 18:07
Hi Charles;

I was diagnosed late in 2009 but felt a little weak about a year before. Things have fairly slowly developed for me but if you've had trouble for 20 years your progression is very very slow.

I would be careful how much exercise you do and don't work to your limit.

Regards Terry

njm
20th January 2015, 18:56
Hi Terry:

I had sore muscles for 20 years. I had a consultation 13 years ago where a biopsy revealed I had abnormal muscle tissue wherein I had no lipid fat in my muscles. So anatomically abnormal. I played a lot of sport but had very sore muscles. That may or may not be linked to MND onset. I started with MND symptoms in 2009 (as far as I can ascertain). Now I cannot exercise. I have leg spasticity and cramps and some muscle wastage. My earlier problem may be unrelated but could have been PLS. That is why I am curious about the progression of others' PLS. Over the last year my legs have weakened and shrunk although I still walk with a cane, albeit precariously.

Best regards and thanks for responding.

Charles

Explorer
20th January 2015, 21:52
Charles, thanks for your pm to me. I tried to answer you by pm but it said 'error ', so decided to answer on the forum. I would say that my pls started very slowly but after about 4yrs I was at the stage where my balance was badly affected and I had two bad falls which resulted in serious fractures.Now I am in a power chair all day as I cannot walk at all. At least I don't have to worry about falling any more and I can get around quite well.
In the last 3to4 months my chest muscles are weakening and my breathing is too shallow so I have been put on a Bipap machine at night to more fully inflate my lungs. It takes some getting used to but it's worth persisting.
Do hope you can manage to keep active and as well as possible. Best wishes. Gwen

njm
21st January 2015, 16:51
Dear Explorer:

Thanks for your rely. What I can now deduce is that PLS does start slowly but once it converts or progresses to ALS it follows an ALS speed progression. That appears to be so with me too. I probably had PLS for some years and it progressed to ALS in 2012. That is when my balance was affected. That progressed to ALS in August 2013 and precipitated me seeking a diagnosis that delivered MND. Through 2014 my legs and balance have deteriorated significantly to the point where I walk poorly with a stick. My guess, from what you and Terry have said, is I will likely progress onto a powerchair in the next 8 months. At that point I will have to stop working. Thanks for your response.

Charles

Terry
21st January 2015, 17:17
Hi Gwen and Charles;

mine has progressed at quite a steady rate and I believe not all PLS converts to ALS.

Terry

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