Wide Pulse Stimulation

[kevinstokes]

Diagnosed with MND in April 2022 but SOD1 gene mutation not confirmed till October. Started Tofersen treatment under the early access programme late November 2022. Having dose 6 next week. Wheelchair bound but still good above the waist. Seem to have stabilised with some very slight improvement in leg muscle flexing.
Going to a neuro physio twice a week and Wide Pulse Stimulation has been recommended to help try and rebuild some muscle.
Cannot get a definitive answer from medical team on whether WPS would be detrimental but they suspect it might not have any benefit.
just wondered if anyone had any experience of WPS or electrical stimulation - good or bad.

[Ellie]

just wondered if anyone had any experience of WPS or electrical stimulation - good or bad.

You've asked the question on the MND Connect forum, so won't necessarily get replies from anyone who has first hand experience of using either WPS or E-sim.

You might be better off (also) asking on a sub-forum read by people with an MND, such as the Treatments and Medication sub. Tbh, I don't know if there is anyone here using it but maybe some newer members do, or have used one.

[MNDConnect]

Dear Kevin Stokes,

In the past we have referred people back to their neurology team, as they are best placed to advise you if this treatment would be suitable for you.

You say that medical team have been non committal about the WPS, this may be because there is no definitive evidence about the use of the treatment for someone with MND.

MND Connect do not have any anecdotal information on the use of WPS, so unfortunately we would not be able to confirm if this treatment would be beneficial for you.

I am sorry I was unable to help in this instance.

Kindest regards
MND Connect