I’ve had RRMS for over 20 years and have had many DMTs. In the last 5 years, I’ve had 2 rounds of alemtuzumab, but then had a relapse (alongside developing hypothyroidism), so switched to Kesimpta in May 2023. Since being on Kesimpta, my lymphocyte count has hit the floor - so much so, I’ve been asked by my neuro to take two “breaks” (so have skipped two months since I’ve been on it at two points).
Yesterday, out of the blue, I had a frantic call from an MS nurse asking me to go in this coming Monday for a JCV test. She’ll meet me at the blood test area and then take the test to the lab . Now, I only saw a neuro a couple of weeks ago, and none of this was discussed. I’d had an MRI but the results were not available, so the consultant I saw couldn’t comment. However, she was NOT my “assigned” consultant - I’ve actually only met her once in 6 years. But when I asked the MS nurse why I suddenly needed the JCV test, she said, “Prof XXX wants it done”.
Now, me being utterly paranoid, is concerned that a) surely I had a screening test for JCV before I had alemtuzumab? b) are my MRI results back and she’s worried about PML? or c) should I stop trying to second-guess everything and chill-out?!
Huge thanks for any advice/assistance/words of wisdom