Hi all, or anyone that cares to read this. I’m newly diagnosed preliminarily with RRMS (march2017) I had my first symptoms in June 2016 but as I’m sure many of you have discovered yourself, if I really look back, I can see that I had symptoms a long time before diagnosis. It’s taken me a long time to work up the courage to come on this site, ive known since ladt year that ms was a strong possibilty, and it’s been a hellish emotional rollercoaster since then. My first symptoms last year were a progressively numb right leg and drop foot and weakness in my left. It ended up with me being hospitalised because I couldn’t walk, but at the time they thought it was just another slipped disc. Then came multiple MRIs and an initial diagnosis of Clinically Isolated Syndrome or possibly Transverse Myelitis, but they warned me due to spots on the brain, there was an 80% chance of the diagnosis changing to ms. A couple of relapses and MRIs later and that’s exactly what happened. This all sounds incredibly self pitying, and I apologise for that, I don’t mean it to be, I’m only at the beginning of this journey and I don’t talk to anyone about it. I don’t even talk to my husband-partly because if I do, I’m admitting it’s real and partly because unless you’re going through it yourself, you can never understand the emotions you go through. I guess I’m just looking for advice or positive stories. I know how this disease can end up, but I’d love to hear from anyone who has had it for many years and is still mobile. I just recently started on Copaxone-THATS been an eye opener, put it this way, I don’t ever want to be stung by a bee or a wasp! But if it helps, I’ll happily inject myself every day for the rest of my life.
Lots of love to anyone that’s been living through this, or like me is new to it
Hi Sarah
I’m afraid I can’t give you a positive story about how I’m still mobile after many years, I’m not. But those people do exist and one or more are bound to answer your post.
But, I can give you some hope for the future.
I assume that your relapse which landed you in hospital has either completely or partially remitted?
In that case, the most important thing you can do for future mobility is get fit. In particular, get your core as strong as possible. That will stand you in good stead for the future. If you’ve not been given access to physiotherapy and need some help to get started, then ask your GP, MS nurse or community neuro services for a referral.
You should also get help with foot drop if you still have it, and get a referral to a continence nurse if you have any bowel and / or bladder issues. Basically, if you have any ongoing symptoms, get help to deal with them. This is what will keep you as healthy and disability free as possible.
I’m surprised that you’ve started on Copaxone rather than one of the more effective oral disease modifying drugs (DMDs). I would have thought the best first line DMD was Tecfidera rather than Copaxone. Copaxone has an average relapse reduction rate of about 30-35%, whilst Tecfidera is about 50%. In addition, it’s an oral therapy rather than an injectable. Obviously you may have good reasons, or possibly a Tecfidera prescribing centre hasn’t been set up in your area (so maybe it wasn’t available to you). But if you do continue to relapse on Copaxone , then in your situation, I’d push for a change to a different drug. And if you qualify for a second line drug, then Tysabri would be the best option (a monthly infusion and 70% relapse reduction rate).
Certainly I was perfectly mobile and didn’t look disabled for 10 years after the start of MS. In fact, my mobility deteriorated severely after a humdinger of a relapse about 5 years ago. But I am unusual in that I had relapsing remitting MS but was unable to take DMDs due to bad drug reactions to three different drugs. I have also had MS for twenty years, the huge variety of drugs and therapies (such as Functional Electrical Stimulation or FES for foot drop) just didn’t exist. Neither did the internet and this forum. So whatever questions you have, you can be certain that other people have experienced what you are going through and will do their best to help.
Sue
Hi Sue, thank you so much for taking the time to reply.
Yes my initial episode did get better, after about 5 months even the foot drop improved, my relapses so far mostly involve a flare up of the numbness in my right leg. As I’m only at the beginning of my journey and because my relapses have so far been mild compared to many other people’s, I chose Copaxone based on the minimal to none side effects. My other two options were rebif and another whose name I can’t remember, but the side effects were potentially very unpleasant.
If you don’t mind me asking, are you unable to walk at all now? Has there been any improvement at all since that particular relapse? I think I’m more scared of losing my independence and not being the mum that my daughter needs. That and losing my job. I had no idea there was physio options available for ms, I will certainly look into that, thank you. I’ve researched a lot since ms was first suggested, but I’ve still got an awful lot to learn.
Thank you again, Sarah