Hi all. First time post. I was diagnosed with RRMS eleven years ago (aged 35) and have done pretty well over that time. A few noticeable relapses mainly affecting legs and one impacting speech in 2018. The general pattern was that I recovered pretty quickly. I could feel my legs getting a bit weaker over the years but was still out running 5k on a regular basis (despite being overweight) so didn’t think too much about it. The last 3 months have been a different story. It feels like I’ve had 3+ consecutive relapses since March, and never really recovered from each one in between. Mid March was mainly weak legs, enough to stop me walking the dog for a bit, and a mild case of ms hug.
Then late April, just as things seemed to be picking up following the March relapse I had a bigger one. Very weak legs, lots of altered sensation on legs and abdomen. A couple of weeks later, again as my legs were improving I went downhill again. Leg weakness again and lots of altered sensation, but also issues with left arm and hand (spasticity, weakness and numbness).
Those symptoms were improving gradually before a few days ago my legs got much worse. I’m on holiday at the moment and I’ve had to quickly buy a walking stick to help me get about as my left leg is the worst it has been.
I saw neurologist a few weeks ago, who was upbeat. Saying I’m only on copaxone so we have options for stronger meds pending the result of MRI scan in a few weeks. I was doing ok ish when I saw neuro, I’m significantly worse now.
Mental health has taken a real hit over recent months. I’m really struggling to stay positive, and constantly fearing the worst (having to give up work, sell house etc). With all of this MS activity happening in a short spell it’s really difficult for me to think this is a relapse and things will improve.
Any words of wisdom from others gratefully received.
Stay safe
Jon
I am sorry that your MS is rearing its ugly head.
Your situation reminds me in some ways of my own experience: 10 years on Avonex, mostly OK, then latterly not OK at all and an upgrade - not before time - to Tysabri. I remember all too well the last couple of years on Avonex, reasoning to myself that all these relapses, all of them leaving lasting deficits and disability, were just something I would have to put up with. Thank goodness for Tysabri. I have now had ten quiet years with no relapses and no obvious worsening of symptoms. So yes, the stronger treatments can be a total game-changer when MS has switched up a gear. The secret is to get on one of them before there’s too much harm done. Sounds like you are on that road, or a similar one, now.
And yes, I’m not surprised you’re struggling and are finding happy and positive thoughts hard to come by. All I can say is, please take heart from knowing that the stronger DMDs can be really effective and can stop even highly active RRMS in its tracks. I hope that life gets better soon.
Alison
Hi Alison, and thanks for your reply, very helpful, and I’m glad you’ve done so well since the switch to Tysabri. My Neuro mentioned moving to tecfidera or possibly ocrevus depending on the results of my upcoming MRI. She said that before this latest worsening so I’m guessing that my current symptoms make ocrevus (a stronger drug I think) more likely.
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Ocrevus is one of the big hitters too, so that would be great, wouldn’t it? FIngers crossed that all goes well. My only suggestion would be to hold out for ocrevus if there’s any question about it. Your MS doesn’t look as if it’s up to any good, and you don’t want to fail on another weaker drug and suffer further losses before they start you on the hard stuff.
Alison
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I thought I’d put a little update here. A few days on and things have improved considerably. I’m walking much better, no longer needing a stick and hopeful for further recovery.
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That is wonderful news - thank you. The body’s urge to heal is very powerful, and is always our friend.
Alison
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I thought I’d put a positive update on here. We’re now a few more weeks down the line and things have continued to steadily improve. I can now walk the dog for 50+ mins without the stick. Legs are a bit heavy and uncoordinated but significantly better than they were. Other symptoms seem to be settling also. MRI confirmed new lesions on brain and spine, and the contrast scan showing some of them still active. Back to see consultant in 3 weeks and sounds like I’ll have three of the most effective DMTs to choose from (mavenclad, ocrevus, kesimpta)
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That is good news indeed. Thank you for the update. Onward and upward!
A
x
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