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Symptoms

I’ve only ever had sensory symptoms and some numbness or weird feelings in my feel with my M.S. That is up until this relapse which caused weakness in my left leg. This when I started my steroids got better however now I feel seems to reverting back to what it was but not as bad. I finished my steroids nearly two weeks ago so is this likely to still improve with the physio I’m doing or is it damage I have been left with and need to live with or is it a relapse that might take a few more months or might even benefit from another dose of steroids? I love exercise but feel right now I cannot even ride an exercise bike. I don’t understand as my last MRI showed very little progress (only apx 4lesions). So why is this happening and does this mean that I am no longer R/R? And am secondary progressive. My walking is fine (touch wood) just struggle after about 390yards or ten mins. I can stand on my legs however for quite a length of time. I’m due back at work too this Monday so hope this will not hinder anything however staying at home is giving me too much time to think and dwell and I’m becoming quite negative which is not me :frowning: popped into work for an hour today and felt good seeing my colleagues and having the banter you have in a workplace, although cried in front of one very good colleague/friend…again not me?, but its all down to this leg and me worrying about how will I be able to have walks with my family, have days out etc etc?.. See thinking too much? The leg started in November so will it take a while to repair as I didn’t think it was a relapse really until mid January? Thanks guys xxxxx

Just wanted to bump my post up as feel I need some response. Thanks

Hi Lisa, it could be that the steroids are still working, in the background. My MS affects my left side, so I know where your coming from, I think my leg is damaged now, but I have had this for 17yrs? When I was younger (I’m 46) I got over elapses pretty quick, but saying that, some relapses lasted 6 months, after a lot now, I think this is how it is! I have been suffering with severe depression since August last year, because I find it really hard to talk to anybody about, it’s like if I don’t mention it, it doesn’t exist, this is totally the wrong way to go about this, I know, and am learning, I’m going to see my MS nurse on Wednesday for the 1st time ever, yes bad isn’t it lol. Please speak to your MS nurse about your concerns, as there maybe another treatment to try, or at least put your mind at rest with some facts. If your anything like me, I imagine all sorts of things, which is silly, and only brings you down more.

I hope you feel better soon, and get some positive feedback here, or from your MS team xxxxx

Hi Lisa. you bound to be very confused about everything! I have only recently been told I an SPMS, from RRMS. Im not happy, things seem to be progressing rather rapidly for my liking!! Think due to low mood you are perhaps “having a moment” we all have them!!! Try to keep positive, this illness is the most profound Ive ever come across!!! Happy thoughts hun, keep walking, days out etc, life goes on, thank the Lord!!! Take care Tracey xx

Thanks for that advice…definitely think I’m having many moments but I have too much time to think. I’m 32 so I’m hoping I’m not going into progressive? Was expecting a gradual decline but I believe if your left with damage from a relapse this means your progressive??? Or am I being mistaken. I’m not on any meds presently but maybe this is something I need to be looking at? I do talk about it and my friends, colleagues etc know about my m.s and are very good too about it. They keep me going but when I am on my own then I question everything and my future/families future. I’m really hoping my leg improves and it does feel like its getting stronger just this walking too far I struggle with, rest for five,ten mins and its fine again. And I can manage to stand for quite a while really, actually do a lot of my exercises in that position. Hoping ill get more advice too. I am waiting for the M.S nurses too xxx

Report post Like (0) quote Thanks for that advice…definitely think I’m having many moments but I have too much time to think. I’m 32 so I’m hoping I’m not going into progressive? Was expecting a gradual decline but I believe if your left with damage from a relapse this means your progressive??? Or am I being mistaken. I’m not on any meds presently but maybe this is something I need to be looking at? I do talk about it and my friends, colleagues etc know about my m.s and are very good too about it. They keep me going but when I am on my own then I question everything and my future/families future. I’m really hoping my leg improves and it does feel like its getting stronger just this walking too far I struggle with, rest for five,ten mins and its fine again. And I can manage to stand for quite a while really, actually do a lot of my exercises in that position. Hoping ill get more advice too. I am waiting for the M.S nurses too xxx

That meant to say waiting for the nurses to ring me? One last question, should I be considering DMDs now? X

Hi Lisa,

I was left with a limp after my last relapse (June 2012) but am still RR so try not to worry about being progressed on to SP. Your leg may improve you just need to give it time (I know its hard) but even with my limp I am no better or worse than I was before the relapse I have just learned to adapt a little while walking (taking my time etc.)

Talk to your MS nurse they are brilliant for putting your mind at rest and calming you down. As for DMD’s there are criteria you have to meet and I may be wrong but I think it is 2 relapses in 2 years but I may be wrong, if I am someone on here will correct me. I was put on a DMD after my last episode but it took so long I didn’t start it until 6 weeks ago so if you are advised to go on one please don’t expect it to happen overnight.

Take care

Claire

Thanks Claire, this is my third relapse in just over two years. Im having physio too but think im just worrying as the steroids always corrected my relapses and I was left like I was prior to relapse. Then when I read sp is when you don’t recover from a relapse I worry esp as ive not even tried medication really :frowning: but then I left it longer before the steroids, so wonder if thats done the damage? And is damage repairable? Then I worry this worrying isn’t helping either! And I am usually so positive, I need to find that bit in me. Maybe returning to work will help. X x x

Not so. Some relapses leave some permanent damage. I am RRMS and I have recovered completely from some relapses; others have left some permanent damage. The permanent damage is what is left when the inflammation has all gone away and the nerves that were under attack have recovered as much as they are able. That’s accumulation of damage, not progression.

With luck, you will recover completely from this one, as you have done before - I hope so. Sounds like you are on the mend, and there is still plenty of room for improvement. Sometimes it just takes time. Hang on in there!

Alison

x

Hi Lisa

I will get into trouble for saying this, but there just isn’t a clear line between RRMS and SPMS. I’ve spoken to scientists researching in MS who believe that no-one ever loses function when they’re in remission after a relapse. But that is just nonsense. Everyone (or everyone I’ve ever met or seen a post from) starts to lose function after they’ve had a few relapses. As the disease progresses, generally the remission bit gets less clear, some symptoms go away when you’re ‘in remission’ but some you’re stuck with for a long time. But even those might go away a few years down the line.

My advice would be, put the idea of SPMS out of your mind. If anyone suggests you’ve got it, point out to them the symptoms that have improved since your last relapse. My reason for saying this - once you’re labelled SPMS, you won’t get any dmds. And I think that’s a bad place to be.

Thank you. I would find it a shocker if I was spms as my MRI scans have been quite positive with only a few lesions unles I’ve developed more in the last eighteen months. I do think I am still R/R and maybe it’s time to consider DMDs . My m.s nurse rang today and said she wants me to take another two weeks off work which I’m not happy about however she feels if the legs improving but still up and down then its important I rest and I cannot do that at work. I know what they are saying and I will take their advice as they know better than me I suppose. Just will have to really find ways to occupy myself. They also said that I may have still been doing too much by trying to walk further than I need to instead of letting my leg repair. I am presuming icanstilldo some physio exercises but again have to be careful with these. Hubbie says I need to treat it like an injury, let it repair as best as possible then strengthen it? The M.S nurse also said that she has noticed I’m not on any medications and she has highlighted his to my consultant too. Maybe it’s time to swallow my pride and look at these DMDs. I hate needles though, can’t even take my son for his jabs. Although when I had him had 4blood transfusions and blood tests morning and evening but I’m still a wuss!!! Xxx

Lisalou I agree with Alison100, sometimes you are left with residual damage, but recovery can be very slow too. I had my last relapse 18 months ago and it has taken aaaages to get back to normal, in fact i still have a bit of numbness and heavy feet. Its not counted as secondary, its just i’m left with some damage, who knows it still might improve. I am 32 as well and find it scary if i think about it too much.

Thanks amylou. In a strange way it’s reassuring I’m not on my own with this and your msg provides me with some reassurance that ill get there too, as best as possible. What are your symptoms? And what damage were you left with if you don’t mind me asking? Xxx

Numbness in my lower half and very tired legs. At the beginning of the relapse I found it hard to walk any distance, my legs worked fine but they got very tired and heavy and uncomfortable quickly. Now, about 18mths later I have tiredness in my lower legs and feet, but I can walk much further and for longer (have two small kids so on my feet all day), the sensation is nearly back to normal, but my feel still feel a bit peculiar LOL.

That sounds like my left leg at the minute so hopefully that’s a sign ill get better especially as I have a three year old and want to be able to do things with him. My legis getting stronger but then I have days when it’s not as good which just makes me panic that its not going to get better :frowning: but I need to be positive and learn to rest a little more too …easier said than done though xxx