Q&A 35 - metformin ....

Questions

Q1: I was diagnosed with MS 35 years ago.  I lived with it for 20 years and played Tennis until 15 years ago. I recently started taking 1000 mg/day of Metformin to protect me from age-related diseases and concurrently help with MS.  I read that UCLA has just finished a one-year clinical trial using Metformin to treat secondary progressive MS and Remyelination (NCT 05349474). I understand that Fractalkine will also remyelinate axons. Might you offer some advice about Metformin or Fractalkine in remyelination?

Q2: I have always known that EBV was the cause of my MS. I was diagnosed in 1994 and always began by telling neurologists that I developed mono in 1990. I sensed a lot of impatience with this before recent research - "Yes, yes, get on with it, get to the MS diagnosis" was the usual response - but I also knew somehow that the mono was what had caused it. I felt it somehow, as the symptoms felt similar (especially fatigue). Anyway, after getting optic neuritis and then being diagnosed in 1994, I was free of most symptoms for about 27 years. Very lucky, I know, and had only facial distortion for a couple of weeks once, a bit of numbness and a 1-week return of the optic neuritis in that lengthy period. I enjoyed a 25-year-long career before I had to retire at 54. So, relapses didn't predict the course of my disease at all. Then, in 2020/21, I went downhill. I increasingly found walking difficult, moved to using a cane, and now have to use a walker. MY EDSS has declined very quickly. 

My neurologist put me on Natalizumab (Tysabri) in 2022, but although I tolerate it well, I have experienced no benefits (other than the statistical possibility that relapses have been prevented). I am considering switching to Rituximab since I know that it is effective against EBV infection. But I feel it in my bones that what I have has been caused by EBV, and I understand that Natalizumab is not necessarily effective against disease progression - which I have certainly experienced in the last four years - and does not deplete memory B cells.

I know that you cannot offer me medical advice, but do you have a view regarding my treatment?

Q3: Have you ever heard of baclofen or other muscle relaxants causing sleep apnoea in MS patients? If so, what should one do if they use baclofen to ease spasticity during the night but make apnoea worse?

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Answers