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Arghhh it's driving me to distraction :-(

Good evening everyone hope your all as well as can be I’ve been suffering quite badly since well before Christmas heavy legs with bands round them, bands round my wrists and weakness, to the point where I can’t manipulate my knife & fork or hold a pen to write and numbness in my nether regions cant even feel myself having a No2 :frowning: Anyhow on top of all these things going on for the last 3/4 wks I feel like I’ve had my bum cheeks rubbed with a cheese grater this has now started to spread down my legs, with a feeling like they are sunburt aswell, it’s driving me insane & stopping me from sleeping, I could cry I’m that tired :’-( My gp rang Tuesday to say she would have a script ready for me to collect today from the chemist. I went this teatime to the chemist where my scripts are normally sent & it wasn’t there so I nipped into my GP’s only to find out that the dozey receptionist had sent it to the wrong chemist, which was closed by the time I got there :frowning: I hate this disease and just wish all of these symptoms would do one! I really have had enough it’s robbing me of any normal life these days. Sorry for going on but no one understands this better than you guys, even my family struggle to understand it as helpful & loving as they are. Sue x

You sound very much like you’re having a lengthy relapse. Are you on a dmd? I feel so sorry for you, I know what it’s like to have that awful heavy pressure feeling but I found Gabapentin helped with one area of the body and Amitriptyline for another. I don’t know if anything can take away the numbness and I had the same prob as you a couple of years ago with numbness all down my left side including my bum area !! That was very weird indeed as you know. Numbness took six weeks to gradually go but yours sounds horrendous. I also don’t know what can make the burning go away, mine just comes and goes on my scalp and back but clearly it’s not affecting me the way yours is. Can you take any meds to help you sleep? The trouble is if you’re really tired through lack of sleep that’s probably going to make your symptoms worse. Don’t apologise for telling us how you feel, we know what you’re going through. I’m sure you’ll come out of this relapse but it can be such a waiting game. Do you have an ms nurse you can report this to? Hoping you feel better soon xx

Hi I only saw my neuro in Feb and this was all going on at the time which was noted, followed by a letter to my gp. I’ve tried both Gabapentin & Amytriptalline without success, the script I was picking up today was something else to try. I’m not on any dmd’s as I’m SP I was on beta-interferon about 15 yrs ago but had to come off it as I was having more relapses on it than off it. I then went on to Aziathioprine and that was good for about 2yrs but had to come off as my blood cells were all to pot, with the danger of suffering kidney/liver failure. I really hopeI come out of this soon as it’s wearing me down :’-( Thank you for replying Sue x

Hi again, Sorry i didn’t realise you are diagnosed SP, I should have read your previous posts. Has your gp/neuro suggested steroids to try to dampen down your symptoms or would this risk affecting your blood cells/liver like the Azieathioprin. Hope you can get your prescription tomorrow and that it helps you. x

Hi again, I’m a bit relluctant to have the IV steroids as when I’ve had them previously they have given me lots of facial hair/mustache and people have made comment to it which has really hurt/upset me. Going to try and get an appt with my gp it might be that I’ll have to go for them and just grin and bear it and maybe hide in the house until it goes!! Been off Aziathioprine long enough now for it not to affect my bloods hopefully. Thank you this forum is brilliant for support xx