PLS (was Re: progress report after a weekend of LDN (ME/CFS person))

[Guest guest]

I am really pleased that PLS people are being helped.

Needles to say I am sure I don't have PLS. Nonetheless I have to say the average

ME/CFS person, like myself has never had an MRI scan to rule out MS or PLS. When

you are in this situation and having muscle spasms. I don't want to use that

term lightly because I know it could be worse for others in the group. But I was

having a lot of problems with my muscles not adapting to light exercise and

walking. They would go rock solid. Needless to say a physio did notice spasm.

But because I have ME, not MS the GPs don't know what drugs to offer, so you are

expected to live with it and be limited, using mobility aids.

I have to say, yesterday I went to a couple of shops on foot, with my walking

stick-seat. I went to a pharmacy and newsagents. I actually found that my calf

muscles were not as solid as normal and that is with the 1ml dose! So perhaps I

am having encouraging signs! I do believe I have something to be pleased about.

Although I used my stick-seat as a walking stick, I didn't sit on it in a shop

either for once!

Granted I am still on 1ml but I think I have had an incremental improvement. My

left middle toe still feels tingly in a way.

Last night I couldn't get to sleep through head and facial pain and therefore

couldn't take the co-codamols 30:500, so it took me a while to get comfortable.

I am convinced in fatigue terms LDN may be an icing on the cake thing. However

it's important not to push too much. Perhaps my pain was through missing a rest

when I got back, due to feeling good in myself and my legs not troubling me as

much.

I think even on the 1ml I have had some incremental benefits in my muscles and

feeling a little brighter in myself. However you need the underlying health and

functioning to back up your feeling a bit brighter.

Fiona