I'm afraid I have been misdiagnosed with MS

Here is My Question:
I have MS and when I tested to see what medicines would be good for me, I tested for JCV with an index of 3.59, and my doctor told me that I should do Ocreveus infusions every 6 months. Would doing those infusions cause those numbers to go up any, because she was concerned at first because she said she has never seen numbers that high before for JCV. I'm also afraid I'm being misdiagnosed with MS as my bloodwork was negative and so was my spinal tap and she was confused on why, but continued to say it was MS because of the 20+ white matters on my brain. She said she's shocked I'm not in a wheelchair but I'm probably about the healthiest patient she had she said. She won't test my blood anymore because she tested 2 more times after that and it hasn't gone up. I've done the 2 treatments of Ocreveus 2 weeks apart at the 300 mg and now every 6 months at 600 mg and so I've only done 2 of the 600 mg ones. Should I be potentially worried about not getting bloodwork done for JCV anymore? She said the only way I'd do bloodwork again for it is if my MRI changes, but I have braces so there is a lot of artifact and could potentially cause something to be missed. Thank you in advance.

Answer:
Thanks for your message. It seems that without further information I am able to comment on two issues you raise

First, it is not uncommon to see a JCV index > 3.0. This only means you should avoid prolonged treatment with Tysabri. It has no bearing on your risk of complications (i.e. PML) on Ocrevus

Second, you do not seem convinced that you have MS. It is important for your decision making and your well-being to have confidence in this diagnosis. It is perfectly appropriate to ask for a second opinion from another MS expect to obtain this reassurance. Ocrevus is a great therapy but with rare serious long-term risks (like most treatments). You do not want to be on an inappropriate and unnecessary treatment.

For your information, some people with MS do eventually have spinal fluid abnormalities with repeat testing and white matter lesions have very little cross-sectional correlation with disability. These facts should not be a surprise to an MS specialist.

Revere P (Rip) Kinkel, MDProfessor of Neurosciences
Director of the Multiple Sclerosis Program
University of California San Diego
#multiplesclerosis #MS

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