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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.

This article represents the opinions, thoughts, and experiences of the author; none of this content has been paid for by any advertiser. The team does not recommend or endorse any products or treatments discussed herein. Learn more about how we maintain editorial integrity here.


  • Laura Kolaczkowski
    6 years ago

    Thanks for sharing this – I am always happy to see SPMS and PPMS getting a closer look since RRMS gets most of the attention. there is a person over on Facebook who would like to get in touch with you about this study – his name is Dan Schaut. IF you search FB and send him a message I am sure he would be thrilled. Thanks again, Laura

  • TGN author
    6 years ago

    Laura – Couldn’t find him. Here’s the link:


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