Reply To: New lesion

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1 month ago

I was Dx in 2005 when my foot was sticking out funny all of a sudden (no pain or incident to explain) that was just ok a week later. The neurologist I was referred to order an MRI and quickly diagnosed me (U of Minnesota) and confirmed the strange little things that had been going on for years were likely little MS things and not things like nerve irritation from kickboxing, etc. People finally diagnosed can usually cite years of symptoms before their official diagnosis. Sounds like the average time to diagnosis is 2 years.

I was put on Copaxone because back then it was about the only choice and was very safe. Not that effective compared with what is out there now but at least it was something. I continued to accrue lesions and impact but was not switched of it as the neuro I had switched to (original one had retired) did not feel they had enough history and didn’t trust them yet. When I switched to a different Neuro (as I had moved) he looked at my history and moved me to Rebif and now last year moved me to Ocrevus. I am now classed a SPMS which is a common transition at about my age and time with MS).

Very few people know I have MS and many, if told, would be shocked as I “look just fine” and I wonder what they think someone with MS should look like…two heads? ;-0 but really what their image likely is may be what they see on TV or an older friend or relative that finally disclosed they had it because they were quite disabled…so, of course, what they envision is someone pretty disabled. We know that isn’t fair and not representative. I am finally to the point of needing a walking stick on a regular basis after having foot drop for a few years that likely contributed to me needing a hip replacement a few years ago. I am slowing down ;-/ and have to admit that.

I wish I would have pushed for something stronger earlier. Copaxone isn’t as effective as others and I was complacent…if you think it is time to change it is probably past time to change and I’d push for it. As Dr Boster says “if you are taking birth control and still get pregnant would you consider it effective”? ;-0 we should now expect no breakthrough lesions on a DMT…that is now his expectation. I likely won’t get more while SPMS but it is important to stop atrophy as well and no expansion of black hole. I still want to be on an effective DMT.

I question if Ocrevus is causing me some back pain but that could be from other things. It is listed on Rxlist as a possible side effect and too many post the issue on the Ocrevus FB site so I am questioning. Regardless I will be on something either this, Mazant or another my Neuro suggested. Check them out on Dr Bosters You Tube channel, this is what he says about Copaxone – right for some cases but probably not us.

Good luck!