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Anyone want to talk about FSP?

Krialk Message
10 Dec 2019, 09:23 PM

Hi,

im 52 and was diagnosed in 2012 with FSP (familiar spastic paraperesis.) My mother spent much of her life in a wheel chair and wasn't diagnosed until I was diagnosed. I have a maternal aunt who shows symptoms and my grandmother and great grandmother also had symptoms but were not diagnosed.

i know this is a frustrating and painful disease. Anyone want to talk about it? What was your path to diagnosis? Any tips you've figured out for handling it? Any special FSP or HSP hacks?? Just need an outlet to complain? Hey - we all need to be able to complain and be angry at times. Go ahead and vent to those of us who understand. Any responses welcome!

Felicity1980 Message
5 Jan 2020, 08:06 AM

Has anyone ever heard of or tried Noscapine as a potential treatment for HSP? The HSP research foundation in Australia said they will be conducting clinical trials on it as it may be able to help the progression of the disease.  Please let me know. An article was written on the topic here 

 https://medium.com/@buyldn.com/hereditary-spastic-paraplegia-otherwise-known-as-hsp-is-a-genetic-neurological-disorder-that-b6b2477252ed?source=friends_link&sk=792e5e132fff75d74eb369ab1f0eec5f