Last reply 2 months ago
RRMS worsening with no Relapse?

Ok so I came down with my first symptoms that led to my diagnosis about 10 months ago, doc said it appeared I’ve had it for awhile but of course no way to tell how long.
Within the first 6 months I had 3 relapses.
Well it’s been about 4 months with no relapse, but about 2 months ago I realized I was definitely worse, I had to get baclofen for the pain I have almost every muscle group in pain without it, even with it but more bearable. And to date I realize I am yet again also worse, it’s not a huge change but noticeable enough to realize things are getting worse. No new symptoms just same ones getting worse and none of them go away?? Anybody have a similar experience?
Thank you

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2 months ago

@mike_page , unfortunately, that is the nature of this particular condition, an incurable, neuro-degenerative condition.

All forms of MS are progressive, even if Relapsing/Remitting MS (RRMS) avoids that specific word in its name. RRMS is named as such to identify the downs and ups of this particular variant. However, the ups are not usually recovering 100% of the downs.

Your Neuro really needs to understand what’s going on. The Copaxone, one of the original, first-line MS Treatments may need to be changed to one of the later, more effective treatments. It may be that you have an aggressive form of MS or, maybe, you have already transitioned to Secondary Progressive MS (SPMS).

MS is like that, a unique, individual and unpredictable illness.

2 months ago

Hey Mike, I’m sorry to hear your disease activity has been so aggressive! You’re really a fighter. I hope you have a great neuro who will fight it just as aggressively. Please keep us updated on how you’re doing!

2 months ago

Hello @mike_page, I get you. I was diagnosed 2 years ago and, if I’m honest, I find that the descriptions of RRMS are generally misleading in terms of my own experience and what I often read on here. I have yet to find a description which matches what I have which, thankfully, doesn’t appear to be too aggressive. However, one thing I’ve learnt is that sometimes I think things are worsening, when in reality, they are perhaps just changing, shifting, or relocating. And this happens, with or without a relapse or more new lesions. I also that when I am preoccupied by thoughts of MS, the symptoms seems a lot more evident. When I am distracted, they tend to diminish. The problem with the term ‘relapse’ is that inimplies that there will be recovery, back to normal. In some cases this is true, but not all. So, stick with it, stay strong, and make sure you always keep your neuro team updated with what’s going on. All the best dude x

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