Last reply 1 month ago
New lesion

Just received result of annual MRI of brain and CSP. Quick recap is diagnosed w MS 1998. No DMT or identifiable symptoms until 2017, been on copaxone for 3 years. Most recent MRI says new lesion r fr lobe, and a Highlighting peri ventricular lesion which is also new. I’m feeling a bit alarmed! I don’t know if this is psychologically taking a toll on me but I am exhausted and stressed. Anyway I am to visit my neuro in November but I have emailed to see if he would like earlier appt. I’m scared and I feel like crap. I am angry at this disease and I especially hate how no one seems to ‘get it’ because I ‘look’ fine. I’m sure others have had similar experiences, I’m not so sure about copaxone, maybe another medicine is in order. Is this indicative of SPMS? I just have a lot of questions and am trying not to think the worst.

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nicolajinks
1 month ago

I personally have only just been diagnosed but I completely understand how you feel about people not getting it. I have been really lethargic the past week and people keep telling me just to get up and get on with things, it gets really frustrating.

Sending love, you can do it 💙💜


vixen
1 month ago

Hi @anigieh, all understandable emotions. What really counts regarding lesions, is how you are feeling physically. Many people have newer lesions with no discernible new symptoms, and some have new symptoms with no new lesions (I’ve had this). If you’ve been stable for a long time, I can see why your anxiety is up. But, you can look at it like its a ‘blip’; we all know that stress has a real impact on our MS so try to find a way to get your fears in line if you can.
At least you know you’re in good company here x


itsmewithms
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. https://www.youtube.com/watch?v=Sd69KmEpsWM&t=48s

Good luck!


angieh
1 month ago

Thank you, very good insights on the video. I do think it’s time to have the discussion of change w my neuro. I’m not thinking I should be complacent at this point. I am actually looking forward to this portion of my life, still working full time at 53 and looking at retirement in the next 10 years, hopefully doing well!


stumbler
1 month ago

@angieh , ignore the technicalities of your recent MRI results, This is for the benefit of the medical profession. Just consider this as MS progression. Unwelcome, but to be expected with a degenerative, progressive condition.

What is clear is that your present Disease Modifying Therapy (DMT), Copaxone, is not up to the job in hand.

This doesn’t surprise me as Copaxone is one of the original DMTs and is a first line medication. There are better, more effective DMTs now available, which should be considered. You should take some time to read up on these DMT options, so that you can take an active role in any related discussion with your Neuro. The following is a good starting point :-

https://www.mstrust.org.uk/about-ms/ms-treatments/ms-decisions-aid

(This tool is UK-centric, but there’s no reason why you shouldn’t use it as a reference point.)

You seem to have a few concerns that are presently “bugging” you. Write these concerns down as a list to discuss with your Neuro. Then you can dismiss these concerns until the appointment.

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