Hi…feel like I’m forever posting on here about so much but find it really helps to talk to those who been there and all that.
Was diagonised in April…my legs have been weak since Xmas last yr and got worse since diagonised…as in at Xmas I could walk for about 10mins fine…now barely a few minutes… what I really am wondering is Will they ever improve? The docs said I’ve got rrms but I now think it’s spms as I am not recovering from relapses…I’ve still got bad jerking in my legs…tingling all over body and bladder problems…they have not gone and its a year… are some symptoms just ones that can go on continuously or do I def not have rrms? I’m just so scared my ms is worse than docs think and I am on rebif but I really feel like I need stronger medication as do not think rebif is helping…I also have numbness in feet which gone from left to right foot and sometimes my feet r soo cold-relelaspe?
Has anyone any similar experiences when it comes to recovering from relapses and any thought on my form of ms?
Hmmm well early on for me I had attacks each christmas, yaaaay! In my first two years I had:
Days where I felt I had aged from 23 to 80 and it was hard to walk and I got so tired (This eventually passed)
Totally numb legs that made it hard to drive a manual car (I got an Auto, it’s fantastic!)
Numb hands like I’d just had them sitting in the freezer for 20mins and I will admit it nearly drove me insane! (This passed too)
Nearly blind so that I couldn’t see what was sand and what was water on the beach (Sunglasses really helped, and just sitting drinking something nice and cold)
No balance
All of this may sound a bit horrible, but it did right itself. I’m assuming from your post that you haven’t been diagnosed for too long, a year or two? All I know is that my symptoms were crazy and intense in the first few years, and then I began to have christmasses where I didn’t have an attack really.
At the moment I have very gentle numbness over most of my body, but it’s nothing, my feet are the most numb, a tiny loss of balance, and the ever present fog vision in my right eye. Pretty much a small bit of each attack has stayed, sometimes it gets worse, sometimes it just stays as it is and I get used to it and don’t even notice anymore.
I am on weekly Avonex intramuscular injections and either I naturally stopped having intense attacks or the drugs finally started making a difference, but that took about 2 years. It seems to be a similar drug to yours? I thought it wasn’t working and secretly hoped it wasn’t so I didn’t have to have them anymore, but I do think they are working now. For some reason I wasn’t too worried most of the time about things getting worse. If I do end up in a wheelchair, then in my mind I’ll get really buff arms and I would make sure I had an offroad one (maybe even one with pedal power too so when I can use my legs, I can sit while pedalling).
Steroids helped make the attacks go away faster but I was left with traces of the attack. Aand numbness seemed to take eons to go away for me. And the eye stuff too.
I don’t know if anything here has helped really, the only thing I know for sure is that the first few years are crazy and the Avonex/rebif stuff may take a few years to really kick in?
Hi Rose, I don’t have a Dx yet. I am a long standing limbo lander. I have a progressive problem with right leg. My main issue is spasticity which is getting worse and worse. I don’t have numbness or tingles pins and needles etc. Do you have spasticity ? Because I get the feeling that it doesn’t come and go in the same way other more sensory symptoms do. It must be something to do with muscle memory. Have you tried steroids? They can shorten relapses. MOYNA xxx
Hi Rose everyone is different but I have had MS twenty years and have had a couple of relapses this year however I have had weakness and have had trouble walking for more than 10 minutes since diagnosis it never really got better but I was happy and adapted my life around it. Don’t know what I shall have to adapt to now although I’ve never taken any medication and when I see the consultant I shall discuss the possibilities open to me . Hope that you will be lucky as I’ve been and although never back to your previous mobility you can adapt and remain in remission for lots of years. Linda
Hi Rolex,i too have very jumpy legs i take ripinerole for that and baclofen for spasms in my legs i think its the baclofen makes my legs very weak but if i stop them the spasms are worse.Also my feet and legs are allways freezing any weather and they also swell up as i am in a wheelchair all the time, i have ppms , i hope you feel better soon dont get to down take care Ivan.