Q&A 21 - diagnosis, relapse and AHSCT

Questions

Q1:  I am writing regarding my daughter, who is 32. I was diagnosed in 2008 at age 47. I am now 63, and about eight years ago, I was then diagnosed with SPMS. My daughter has recently noticed her eye twitching can last for a few seconds, sometimes longer. Her foot (sometimes goes to sleep!!). She also had Bell’s palsy when she was 12. You can imagine my concern; this could be MS.  I do understand treatments are more advanced now, and as someone who has turned down treatment because my Neurologist assured me I was far "too well to consider treatment”. Fast forward ten years, and my mobility is so bad I can't leave the house. Could I please ask for your opinion?

Photo by Katie Moum on Unsplash

Q2: My main question is to try to understand what a true relapse is. I thought I had understood it, but after this spring, I have come away not understanding. 

History: Dec 2017 right optic neuritis, Jan 2018 numbness and heaviness in legs, diagnosed Feb 2018 with MS and found out I was pregnant. Started glatiramer acetate (Copaxone) in March 2019, 5 months after giving birth. I subsequently switched to Ocrevus in May 2020. 

In June 2023, I had what I thought was my first relapse after starting a DMD. The vision in my right eye (the same eye from the first optic neuritis) worsened over a couple of days. I didn’t have a cold, flu, or UTI. After 7-10 days of decreased vision, lack of colour…I knew it was optic neuritis again. Confirmed with an optometrist. I talked to the MS Clinic and agreed to forgo steroids as I could manage the symptoms. 

The MS clinic explained to me that what I was experiencing was not a true relapse but a flare of my old symptoms. And because I had ON in that one eye before, any further symptom would just be considered a reoccurrence rather than a relapse. This is the thing that has baffled me. I understand how old symptoms could flare due to heat, cold, sickness, fatigue, and UTIs. But I thought anything that lasted more than a couple of days and progressively got worse than that was considered a relapse. Nowhere have I read that if you had a relapse with the same symptom/lesion, then that’s not a relapse. I’m guessing I’m not the only one with this impression. I would love to have a better understanding of what a relapse is.

Q3: I was convinced I should pursue AHSCT privately after being discouraged by four separate NHS neurologists. I have since been confirmed to have the procedure in Moscow in June this year. 

I was diagnosed with RMS at 29 in 2020 after problems walking. Looking at brain scans from 2015 after vision problems, the neurologist thinks the lesions on my brain scans were evidence of undiagnosed MS. Delays due to COVID meant I wasn’t diagnosed for six months and then left untreated for a year. During that time, my walking significantly deteriorated, so I now have started using a wheelchair. My MS nurse advised no steroids, and this first relapse lasted 18 months. I started dimethyl fumarate (Tecfidera) (the choice of DMT was left to me) in 2021. I had ‘slight’ and so-called inconsequential activity on my brain scan in 2022, which meant I could choose to escalate to ofatumumab (Kesimpta) in 2023. Since then, I have had no further lesions on scans and no further relapses. I’m just within five years of diagnosis but with a high EDSS scale of 5.5.

I understand that AHSCT is best for those with “active” disease. My question is, is it advisable for me to pursue AHSCT privately even when my disease is clinically and radiologically inactive? Is it still a risk worth my taking now?

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Answers