Anyone with knowledge of Spastic Paprapesis?

[Simba's Mom]

This morning I got diagnosed with Spastic Paraplegia. This came as quite a shock to me, since I always thought my walking issues were because of my back. But MRIs indicated more. Can you give me any idea what the future might hold? I was told it was progressive, but from what I've read so far, it doesn't seem terminal. Anyone with more info?

 

[nikkislaght]

I would be asking for this information from your doctor .
He / she would be the most informed of your condition .

 

[SueM in MN]

This is an information page about it from the National Institutes of Health.
http://www.ninds.nih.gov/disorders/hereditary_spastic_paraplegia/hereditary_spastic_paraplegia.htm

The NIH is a US government department that acts as a clearinghouse for information about diseases/conditions, especially rare ones. They also have listings of current research or treatment studies being done. This is where you or your doctor could find out about any you may be eligible for or want to participate in.

There is also a foundation dedicated to this and related conditions where you would be able to get more information.
http://sp-foundation.org

No one can really tell you what the future holds, other than that the condition in general is progressive, usually affects legs only and the symptoms can be treated. But, how well the treatments work for you, how quickly it is progressive and whether it continues to progress or stops are some of the things that are individual.

I'm going to move this from the disABILITIES Main board (mostly about travel) to the disABILITIES Community board (general subjects).