Discussion about this post

User's avatar
Pam's avatar

Why aren’t there more studies that include people over 65…the population age is getting older. We need to work on myelin repair for progressive ms patients, we can’t stop the disease, so repair the myelin

Expand full comment
Deborah's avatar

Yes i definitely feel discarded by my neurologist. I was diagnosed with PPMS over twenty years ago. I have been offered nothing by the NHS in this time.

I self funded 3 infusions of rituximab , with my neurologist advising I could then have further off label infusions on NHS. This did not happen apparently the criteria had changed by then

.

Majority of people with PPMS self fund physio, massage, supplements, oxygen, to try to stay healthy. I am afraid to say I know more about PPMS than my MS nurse. When I have my telephone appointments with her it is just a tick box exercise.

Millions has been raised for MS treatments & trials, but unfortunately they are not for PPMS!!!

I learn more from your MS Selfie than my neurologist.

Expand full comment
33 more comments...

No posts