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Clear scans so why am I not happy!

For the third year my MRI scans show no new activity so am told the Tecfidera is doing its job. I get that and am pleased however year on year my legs are getting weaker, my hands feel more numbness as do my feet. I can’t walk faster than a gentle pace and so on. My point is that year on year I feel a decline so wonder why this doesn’t show up on scans. I have asked if I am transitioning into SPMS but they are reluctant to say. Anyone else feel the way I do?

regards Trev

The reason the neurologists don’t want to say it’s transitioned to SP is that it might not have. Or could be progressive with relapses, you’re just having a really long break between relapses.

And of course, once they say the words SP, you are no longer entitled to DMDs.

Mine only said it was SP once I had completely run out of DMD options. I remember sitting in the neurologists room while he wrote down all the DMDs and one by one stuck a line through them. Basically nearly everyone I tried gave me intolerable side effects, from going cognitively doolally, to hepatitis, low lymphocytes, to stopped working. He even considered Lemtrada, but that got a line through it because of having already had overactive thyroid, (and underactive as a result of the treatment. Basically, regardless of the fact that I was almost certainly progressive, he would’ve kept me on a DMD if there was one that I could’ve taken.

And my MS and my MRIs have not changed in a few years.

If you felt really strongly that you were progressive, you could probably change the neurologists mind and stop taking the Tecfidera. But if you did that and then had a relapse, it’s probably a bit late to change your mind. Talk to your MS nurse about it. (Assuming you have one.)

Sue

Thanks Sue. I will mention it to my main consultant when she returns from maternity leave in September. I agree in that I would be foolish to come off Tec as I tolerate it well. I guess I want some kind of explanation as to why slow continued muscle weakness doesn’t show up on scan. Is it because scans only show inflammation based changes?

Trev

Hi Trev

The answer to you last question is simply that I don’t know. I suppose some of the muscle weakness is due to nerve damage from the past. Or muscle wastage due to the historic nerve damage.

If lesions occur because of inflammatory activity, then I imagine the answer is yes, scans only show up inflammation. But there could also be spinal inflammation that’s not being seen if (as in my case) in general, the scans have been brain only.

MS is just a whole pile of I don’t know. And as we all seem to be different as well, it just adds an extra layer of who knows what!!

Sue

Your symptoms sound very similar to myself.

All my previous MRI scans show no new lesions or active lesions at all, even since being diagnosed 5 years ago, yet my legs are far far weaker than 12 months ago, even 6 months ago, my hands feel “gloved” all the time and my walking is far far worse than it has been since being diagnosed.

The neuro has said its “possibly” a transition to SP.

I was put on steroids a few months ago as the neuro suspected a possible relapse, but personally I dont think it was a relapse because the symptoms had worsened slowly over a matter of time, probably first starting 18 months ago, then gradually got worse over 12 months then the last 6 months, not suddenly like a relapse would usually do.

I’m due another MRI next month so maybe that will reveal something new.

I think Sue is spot on with old nerve damage causing “new” symptoms or gradual worsening.

Once the lesions have done there damage, then they are there for good.

Things may settle but the nerves within that area of damaged mylen will always be a problem.

I think it’s that constant scaring/lesions around those nerves that slowly pushes you towards SP, even with or with out a relapse.