Here is My Question:
I was diagnosed with MS last year. Not sure which type but no clear cut relapse or remission just symptoms that don’t go away. My walking is mostly not affected other than from vertigo so my neurologist isn’t taking me very seriously. I have multiple hyperintense T2 lesions of the periventricular area, a positive LP, at least one major incident we think was the beginning of this back in 2015 when I had Parvo virus. Also VERY BAD “MS hug" but no obvious lesions on the spine but my recent MRI interpretation says there may be 2 subtle areas of signal abnormalities likely representing demyelination. My neurologist wasn’t sure if he could see them and they were only visible on the axial images.
I also have some T1 hypointensities on the MRI of the brain. I read that the 2D images are better at preventing over interpretation of these and I do have them in the T1 2D but they are dark but not as black as the CSF. I was on Copaxone prior to these possible spinal lesions and I have decided to switch to Ocrevus. I was worried mine might be more of the slow progressing type. My main issues are cognitive, MS hug (girdling), muscle spasms, neuropathies, vertigo, and more.
My main questions are, does this sound like progressive type? Do you have t1 hypointensities in Relapsing remitting? Does this sound like definite MS? My neuro diagnosed me but always down plays my concerns about progression and wanting to be on a more aggressive drug than Copaxone so sometimes I just feel like it’s all in my head (pun intended).
I was tested for everything under the sun and it was all negative so its either MS or some other unknown problem no one can figure out. Is it too aggressive to try Ocrevus or is it better to just be proactive and take care of it now? I’m just afraid to play it slow and possibly end up with worse damage. Do the darker T1 areas mean more progressive or more intense disease?
I am not able to determine if you carry a diagnosis of MS based on the information provided. I also do not know your age, which is important. Let’s assume your first attack was in 2015, as you suggest, and you’ve been on Copaxone for a year. It is not clear from your description whether any new problems have developed over the past year, but you may have developed new MRI abnormalities over the past year.
Based on this information let me answer your specific questions:
1. T1 hypointensities occur in all types of MS including relapsing MS but become more numerous and darker with disease duration. They are one of many risk factors for disease progression but this depends on your age.
2. As I said I can not determine if you should be characterized as definite MS based on the information provided
3. Progressive disease is always defined in retrospect and requires objective changes in neurological function on examination. From your description, your disease does not sound like progressive in type, at least not yet
4. There are many great options for treatment between copaxone on one end of the spectrum and Ocrevus on the other end of the spectrum. A lot depends on your age, other medical problems and your possible desire to have children in the near future.
You should talk to your neurologist about oral treatment options to start. Tecfidera, Gilenya and Siponimod (just approved by the FDA) may be more effective than Copaxone and are well tolerated.
Revere (Rip) Kinkel MD
Professor of Clinical Neurosciences
Director of the Multiple Sclerosis Program
Clinical Neurosciences Director
University of California San Diego
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