Hi, I was newly diagnosed in June of this year and am awaiting an appt with MS specialist to discuss next step and hopefully DMDs. My question has probably been asked hundreds of times but I am still finding out and trying to get my head around things. I have woken today with my left arm burning as the day has gone on I can feel a patch on the back of my left leg and now starting in my right leg. I have only had problems on my left side before so does this mean the start of a relapse as it has spread to my right side? Also what could have triggered it as I am deliberately resting, am off work with the school hols and am not poorly with any cold etc? My GP has put me on 20 mg per night of amitriptyline which seems to be helping with the pain my last relapse in March has left me with. Why also have I been left in so much pain when I have recovered fairly well? Sorry for so many questions just trying to understand day to day at the moment. Thanks Carolyne.
Hi Carolyne - my experience is that I get a burning left foot. It’s not so bad I take meds. Unfortunately yours sounds worse . I put it down to wonky nerves giving wrong signals. I get very confused about relapses vs symptoms. Recently emailed my neuro with a relapse update he replied he thought they were symptoms not relapses. I thought a relapse was a new symptom that hadn’t happened within last month that lasted for over 24 hours. I suspect my neuro thinks a relapse has to be disabling resulting in need for steroids or hospital admission. But I really don’t know Im confused. My left foot can also go ice cold. I prefer the burning! Not sure I have helped or been able to answer all your questions Hugs Min xx
You don’t say whether you’ve had burning before?
If it’s new, then it is almost certainly a relapse.
If it’s an old symptom, then it’s possible that the right sided patch was there before too, but it wasn’t bad enough to be noticed over other symptoms. If this is the case, then it’s either the start of a relapse or an exacerbation caused by something like a UTI or the meds are becoming less effective and you need a dose or med change. Given that you say you’re feeling otherwise well, it’s going to be a relapse or a meds issue.
If the right sided patch is definitely new, then it does sound like it might be a relapse threatening at least.
Unfortunately, MS doesn’t need anything to trigger activity - it can happen anytime. March isn’t all that long ago though so it sounds like your MS is still active, and while resting and being otherwise healthy will help your body to fight it off, sometimes it’s just not enough
Why still so much pain although other things have improved? I would guess that the damage to the pain pathways was more severe so that repairs have been less effective there. It’s still relatively early though - people can continue to improve for a year or even more - so try and stay positive, it might still improve; as might this new burning.
You could ask your GP for a more effective med / higher dose if the burning is difficult. Ice packs can help in the meantime - the cold signal distracts the brain from the fake burning signal.
If you have an MS nurse, you should give her/him a call too.
Thank you so much for your replies. Karen, I have had burning before but only in a patch from my left hip to armpit during my March relapse. I have a feeling it could be a threatened relapse as during the last hour or so my whole right hand is burning and right shoulder. Until now only my left side has been affected. I am gutted as for the last few weeks I have felt like ’ myself ’ again even returning to work which I was desperate to do as I have really missed it. I don’t have an MS nurse yet, my neuro told me I would be assigned one after my next appt with MS specialist. The information on this forum tells me that there is a real shortage in The Walton Centre so not sure how long the wait will be. Thanks for the ice tip…off to try it now. Carolyne.