I’m new to the forum. Hi my name is Allie and I was diagonised with MS in December 2010. Was wondering if anyone could help me at the moment it feels like my leg is on fire but it feels cold to the touch and i also lost all feelings in my legs last August but can still feel like my leg is on fire if that makes sense. I have now lost all feeling and movement in my right arm and hand which isn’t good when you are right handed lol. Has anyone got any ideas? I have been in touch with my MS nurse as well and I’m waiting for her to ring me back. Any help anyone can give me would be great and I’m always here if anyone needs help or anything. Thanks Allie
Yikes Allie - that sounds downright awful. I cannot offer anything more than the virtual ((((hugs)))) to help aleviate your flaming limb. You should here from the nurse quickly, if you don’t then keep ringing until she respondes Clarexxx
Hi Allie, and welcome to the site Sounds like you’re having a relapse Burning is a really common one - it can be terribly painful, but usually responds well to neuropathic painkillers like pregabalin, gabapentin and amitriptyline. Until you get one (assuming you want one), you can try using ice packs. Basically the real cold signals override the fake hot signals. (That’s what’s causing the burning feeling - signals telling the brain that that part of you is burning when it isn’t!) I’m afraid I don’t have any tips for the arm & hand Hopefully your MS nurse will come up with something (possibly steroids?). Karen x
Thanks for your help.
My MS nurse did get back to me and it is a relapse the second this year. Am still waiting for my steriods as my local chemist didnt have any in stock so have to wait been waiting 3 days now so hopefully today I shall get them.
I am already on Gabapentin (at mo 1,200mg 3 times a day and still not helping with pain) and Amitriptyline and now got to go back on steriods for four days so will feel like hell but hoping they are going to help.
My MS nurse is arranging another appointment with my neuro to talk about treatment which I don’t understand but kinda glad have got to go and see him again because I wasn’t due to see him until April 2012.
My arm and hand are coming back slowly and got told to rest but its hard when you have been so use to doing everything and now cant.
But no doubt it will soon sort its self out
Allie x
Thanks for your help.
My MS nurse did get back to me and it is a relapse the second this year. Am still waiting for my steriods as my local chemist didnt have any in stock so have to wait been waiting 3 days now so hopefully today I shall get them.
I am already on Gabapentin (at mo 1,200mg 3 times a day and still not helping with pain) and Amitriptyline and now got to go back on steriods for four days so will feel like hell but hoping they are going to help.
My MS nurse is arranging another appointment with my neuro to talk about treatment which I don’t understand but kinda glad have got to go and see him again because I wasn’t due to see him until April 2012.
My arm and hand are coming back slowly and got told to rest but its hard when you have been so use to doing everything and now cant.
But no doubt it will soon sort its self out
Allie x
The treatment that the MS nurse is talking about will very probably be DMDs (disease modifying drugs). If this is your second relapse this year you easily qualify for them. (I’m assuming that you aren’t already on one?)
DMDs help to reduce the number of relapses people with RRMS get. They also reduce the severity of the ones that we still get. If started early after diagnosis, they can also delay the onset of progressive MS. The average reduction in relapses across the people who take the standard, injectable DMDs is about 30% on average (so some people do better, some not so well). This doesn’t sound a whole lot, but if it’s just one nasty one we miss, it’s worth it in my eyes!
You can read all about DMDs on the msdecisions website.
Perhaps you should ask for your pain meds to be reviewed too - there are others out there that might suit you better. Do try ice packs for the burning - you never know!
Karen x
Thanks for your help I will see what I can do
Allie x