SPMS

In 1985, I completely lost vision in one eye. It mostly came back within a few weeks. That is the extent of my exacerbations. Since then, I have been slowly progressing. MRIs show few brain or spinal cord lesions. Most striking MRI feature is atrophied spinal cord. Brain does not appear to be shrunken.

My symptoms are the usual (walking/balance, incontinence, sexual, etc.). Luckily, drugs and devices help with most of these, except for walking. I don’t have many cognitive, depression or fatigue-related problems. I try to accept things as they are, rather than make myself miserable.

I am enrolled in a SPMS trial with the NIH (NINDS). It’s a really good place and gives me a lot of additional testing over my regular medical plan. I’ve had over 20 MRIs plus lots of blood, urine, CSF, functional and other tests in the 1.5 years that I’ve been going there.

If you have SPMS, consider trying a clinical trial. Nothing is approved that safely addresses SPMS. This needs research, if not for us, then for the next generation. Treatment has improved greatly since I got my optic neuritis. The next decade promises more.

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