Stem Cell Treatment for PSP

[harold87]

Hello everyone,

I am new to this community and I happen to join after my dad got diagnosed with this horrific disease, PSP. It breaks my heart seeing him everyday. Someone suggested us stem cell therapy in one of the renowned facility in India.

I know FDA has not approved Stem cell therapy in the US. Does someone here know if anyone has undergone stem cell for PSP treatment?

Thanks Bunches!

[bazooka111]

I am sorry that you are having to join this community due to a PSP diagnosis, but you have come to the right place for guidance, insight and support. Although, I am not familiar with anything on the stem cell subject, I will be interested in reading the feedback you may receive. Blessings to you and your father. xx Kim

[WoodworkerRVH]

Thanks again I tt

[WoodworkerRVH]

I had typed a long reply but it disappeared before I was done and sent it. I couldn’t retrieve it so it might show up. Basically I said that I would be skeptical of any treatment in India. I am a retired MD with PSP. I would need to review their data in detail before even considering it. Their controls there are much inferior to our FDA.I realize that our FDA is very conservative but also much safer.

My thoughts anyway, I think that this may eventually be the most likely option for treatment however it would best be studied here in a controlled fashion.

[bazooka111 in reply to WoodworkerRVH]

I appreciate this post as well.

[harold87]

thanks everyone for responding. We are thinking of NeuroGen Brain and Spine Institute in India. We also consulted one of the doctor in that facility, they do not claim to treat completely but claim that after SCT patient will have 50% improvement.

We, as a family, feel so helpless for not being able to do anything.

[WoodworkerRVH]

If complications or side effects you are a long way from home. Plus you still need to consider pandemic and whether you can get vaccinated prior to leaving. Tough decisions I know. Good luck. Please keep us informed as to what you decide.

[easterncedar]

Hello, Harold87, a quick reply. Several folks here over the years tried stem cell treatment. If I recall correctly there was a clinic in Florida that provided it at one time. There were a couple of reports indicating improvement, but I don’t believe it was ever stated that long-term benefits were achieved. I suggest you search the archives here for the details.

I know how strong the desire for any sort of treatment is. We had a very good neurologist at the Lacey clinic in Boston who specialized in psp, and she was frustrated by the lack of options she could offer. We tried every medication, and were glad to try, even though nothing truly helped. Exercise and physical therapy bought us some time, I think. My guy consumed CoQ10 at high levels for years. Maybe it slowed the progression, but if so, not by much.

Whatever you decide, I wish you all the best, and hope you will let us know what you learn.

Peace, ec