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What do your relapses feel like???

Hi everyone,I have been on Tysabri now for the last 2 years and am experiencing my first relapse for the first time in 18 months. I cant complain, i’ve had a good run, however, i’ve got used to feeling great and as a result, I’m feeling all the dark, emotional pain like a cloud closing in on me. Its not rational I know, but within a few days, I almost feel like giving in again…stupid I know, but when did any of this rollercoast that is life make sense huh? lol …Anyway, my relaspes are not what are ever written as the typical signs. they are like a knorring ache, a pulsating pain in my legs, sometime my arms, hands…every single muscle. Twitches, stiffnes, fatigue…but the aching,wow! What you you fine people suffer from, what are your signs and symtoms??? (and why the hell wont the enter buttom work on this site so I can leave spaces?? grrr) Steve

Hi Steve,

I am sorry to hear you are relapsing. I have all sorts of weird symptoms in relapses, such as tremors, vertigo, spasms. No two relapses have been exactly the same though, so it’s difficult to say what a relapse feels like as they all feel different…for me anyway! I would suggest talking to your nurse and or GP, there may be some meds they could suggest to help you?

The spacing problem is probably because you are using internet explorer as your web browser? If you upgrade to Firefox or Google chrome it should resolve itself. I don’t know why! I just remember that a few other members had the same trouble recently.

Hope things improve for you soon

Laura

Hi Steve

I think relapses are as individual as each person’s MS.

My relapses (2) this year both started with an odd patch of numbness on the soles of my feet followed by a tightening of my calf muscles making walking difficult and a bit painful. Sometimes the pain would be a short, sharp pain and sometimes it would be a nagging ache which persisted all day. In the left leg the pain progressed to the back of my knee and again was more acute and I also had nagging achiness in my thighs. Previous relapses have differed a fair bit to these ones so it’s very hard and fairly pointless to compare your relapses to anyone else’s.

If this relapse is severe enough to affect your mobility it may be worth you contacting your MS nurse or GP for a course of steroids as this will speed up the recovery. I had steroids for the first relapse as I was walking painfully slowly (picture an old granny) and within the week things were much improved. I refused them for the second one as my mobility wasn’t so badly affected and I wasn’t keen on the side effects again.

There may also be some medication that could be prescribed to provide relief from troubling symptoms (sorry if I’m teaching my grandma to suck eggs at this point). I find that whenever I am struggling it helps to talk to my nurse just to have a chat. Even if there is nothing that can be done for me, it can be logged on my records at the time when it is all fresh in my mind and, when I see my neuro for my annual review, he already has the full story so he can decide what it is to be done next.

Best wishes for a speedy return to good health.

Tracey x

Hi Steve! Sorry you’re having to deal with this relapse after being symptom free for 18 mths- just remember, it will pass! Please make sure that you’re looking after yourself- I hope you have a good diet and take all the vital minerals and vitamins that we MS sufferers need. Anyway, lecture over!!! My relapse started on June 5th. I was actually due to run a Half Marathon, but ended up thinking I had suffered a TIA. I was completely spastic on my left side and each and every day thereafter, was also punctuated with really painful muscle spasms and nothing was left unaffected. Life at that point was sheer hell! I could hardly walk or function like a normal human being and must have looked very pitiful as I tried to manoeuvre myself about. I felt embarrassed and completely drained of life. Fast forward to 2 September. I am walking almost normally, but am still experiencing mild episodes of spasticity and spasms (single figure episodes each day). I am still getting wierd pains in my head and a really heavy left arm and leg. Oh! and my left shoulder blade gives me a bit of jip too, oh! and my knee cap is currently acting wierdly. But, the symptom that has taken the longest time to recede is the massive and constant fatigue. Only us MS sufferers know what that really feels like. Apart from that, I feel fine! Hopefully you’ll bob back up to the surface yourself very soon. Best wishes and good luck. Tracyann x

Hi all, thanks for the replies…yep…steriods start on Thursday after infusion. Hate the damn things! in fact i dread them…this will be my 7th time on steroids, alyough, like I said, the last time was 18 months ago, so I cant really grumble. Apart from my first relapse, which was my first indication of MS and was ON, all my relaspes has been pretty much the same, well the major ones anyway. At least since starting the Tysabri ive only had 2 major…1 per year instead of what felt life all the time :slight_smile: Take care

Hi all, thanks for the replies…yep…steriods start on Thursday after infusion. Hate the damn things! in fact i dread them…this will be my 7th time on steroids, alyough, like I said, the last time was 18 months ago, so I cant really grumble. Apart from my first relapse, which was my first indication of MS and was ON, all my relaspes has been pretty much the same, well the major ones anyway. At least since starting the Tysabri ive only had 2 major…1 per year instead of what felt life all the time :slight_smile: Take care