Last reply 6 months ago
Any advice

Hi guys,
I was diagnosed with SPMS a few weeks ago after many years of RRMS. Since about July this year as part of the on set of SPMS, I started to suffer with ice cold feet and right hand. It doesn’t matter what I try to use to warm them up, nothing seems to work, and when they do warm up on their own the pins and needles is “bad”.

Any suggestions would be greatly appreciated

Ian

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rotherhamdave
6 months ago

Hi @ianc. I too have spms. I have pins n needles in hands. Finger tips don’t have much feeling in em n also tremors in my left arm/hand. I’m on gabapentin. I was on a high dosage for tremors but it knackered me out so reduced it down as they wasn’t helping for tremors. I still have a little pins n needles. Gabapentin May be different for you


ianc
6 months ago

Hi @rotherhamdave,
yeah I’m on gabapentin, Naproxen and amitriptyline but nothing seems to help with the cold feet and hand. I know that’s my nerves are playing havoc and breaking down but my feet and hand are actually cold to the touch. I have tried hot water bottles, hiking socks and heat patches but nothing seems to work

Thanks for getting back to me

Ian


stumbler
6 months ago

@ianc , I’m not sure whether this webpage will add anything :-

https://www.mstrust.org.uk/a-z/altered-sensations


ianc
6 months ago

Hi @stumbler
Thanks for this will have a look


grandma
6 months ago

@ianc, bought a pair of hand warmers from Lidl yesterday for £2. Reusable 1,000 times, get very cold right hand in winter whilst using mobility scooter cos of having to drive it, hands don’t really work at all, gloves don’t work due to lack of feeling. Best £2 I’ve spent in a long time. Can wrap one around the right hand handle next to controls and the other sits in my picket. Lasts about an hour, reactivate by breaking thin metal disc inside. Worth trying?😍


ianc
6 months ago

Hi @grandma thanks for this will try anything


mmhhpp
6 months ago

@ianc

My feet are freezing cold all day and i wear ski boots and wool socks, ands cold too I don’t know what to do. Only get warm under duvet sometimes…


ianc
6 months ago

Hi @mmhhpp it’s the same with me, my feet normally start getting cold mid-afternoon with my right hand but never the left one. It doesn’t matter what I do to try and get them warm nothing seems to work, and when I get in bed again with ski socks on they all start to warm up and then the pins and needles take over, oh joy


wjgregg
6 months ago

Hello there @ianc. I was in Manchester last night, and don’t live too far away. I used to live, and work, in Manchester. I can’t offer any insight into your symptoms as I’m not affected in that way. I guess no two of us are exactly the same.

Can I just ask, if you don’t mind, where you on any D.M.T. during the last 15 years? If you were, did that keep any other symptoms at bay?

Cheers

Jon


ianc
6 months ago

Hi @wjgregg, hope you had a good night out in Manchester, the DMT that I was on was Alemtuzumab and it was fantastic and gave me my life back. When I was diagnosed I had very aggressive RRMS, and was only getting a few weeks between relapses.

I was initially on copaxone and mitoxantrone when I was under the Walton Centre in Liverpool but neither drug was having any affect on my symptoms , my consultant at the time couldn’t offer me any other type of drug but had heard about a drugs trial at Addenbrookes in Cambridge and asked if I would like to be put forward for the trial. I agreed due to having nothing to lose, and went on the faze 2 trial. I had two doses of Campath H1 (trial name for Alemtuzumab), it didn’t work overnight but the relapses started to lesson slowly but surely. It took a few years of slow improvements but for the last 6/7 years wow it was like I never had MS. I was a member of cycling club and was averaged 100 mile a week, but hay ho it has now turned in to SPMS. I had a MRI scan about 2 months ago and this showed no new lesions my brain which is fantastic, unfortunately my nervous system took such a battering in the beginning its starting to cause me loads of issues now, which is also connected to my age.

I really hope this help Jon, I cant recommend Alemtuzumab highly enough

Ian

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