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A little advice please

Hi All, Hope your all enjoying a bit of sunshine. I’ve been really well for a few months and have been trying to get on with things and making a huge effort not to obsess about all of this ms malarkey! For the past 2 weeks I’ve been having burning sensations in my neck and across my upper back through my shoulder blade. My hands feel like they have been stuck in a deep freeze and today my toes have joined in, but its not constant. Ive been trying to get in touch with the ms nurse, but usual story…message after message no reply! I know they are run off their feet before anyone jumps in to tell me off! Anyway, does anyone know if this sounds like a relapse, I don’t know if I should just get on with it or contact the gp. Thanks for reading, all advice welcome, Chis

chris

I have PPMS so cannot tell, what about phoning doctors surgery you might get throught to the MS nurse via this channel?

Thanks Trish, He always asks first if I’ve spoken to the nurse. He is very nice and very supportive just need to know if its worth noting or not. Chis

Hi, from reading several posts lately about how difficult it is to contact MS nurses, I am beginning to wonder if it the annual MS nurse holiday! They`ve all tootled off together somewhere and kept the destination secret. In the days when it was thought I had MS, I rang my nurse and she often took 2/3/4 days to get back to me.

The one nurse has a huge caseload to get through, so we can hardly wonder, but even so, when we need them, we need them! If I saw/spoke to my GP as an alternative, she always said I should speak to the MS urse…a vicious circle!

Perhaps it is a relapse, but as you know, this is not my area of expertise!

How long is it since you saw your neuro? If its been a while and youd like to see him, why not ring his secretary and ask if you can get an appointment.

luv Pollx

Hi Pol, Thanks for the reply. I’ve got an appointment on 10th July. might just have to muddle along until then. Chis x

Hi Chris

If the burning across your back and shoulder blades was a new symptom and you’ve now had it for 2 weeks then, sorry, it does sound like a relapse. I had this in my left arm over 3 years ago and my nurse prescribed amitriptyline for the pain. She tried to tell me it wasn’t a relapse because it wasn’t stopping me doing anything (except for the fact I wasn’t getting any sleep?!) but my neuro logged it as a relapse. How are we supposed to know what is/isn’t a relapse if the health professionals can’t agree?

Anyway I’m still on the amitrip because every time I try to cut it down the burning comes back. I hope your nurse does get back to you. Mine took a week to get back to me at the time and it took a further week for the meds to take effect.

The freezing toe/finger thing is another symptom. Is this new too? My toes often do this but for me too this is residual effects from a relapse I had several years ago. It comes and goes and I’ve learned to live with it but if it’s new for you then at least get it on your record.

Hope things improve for you soon

Tracey x

Hi Chris, just wanted to add my own experience. I get a pain and burning across my shoulders and neck as a sort of “aura” before a relapse and is often my first clue that one is one it’s way. I wonder if this may be the same for you with the toe problem being a new symptom. I would ring your neuro’s secretary and ask if there is a relapse clinic you can attend. Good luck. Max x

Can’t believe it. Went out today for first time in 2 weeks and they rang!! GRRRRRR! Phoned as soon as I could and back to answer phone. Want to cry! Chis

innit a chuff when that `appens!

pollxx

Hooray, called again and this time she phoned me back! Sounds like a relapse but advised against another dose of methylpredisnalone ? Steroids to me! and said to up the dose of amatriptyline. Thank you so much for all your replies. Chis x That’ll teach me with my everything’s fine attitude!!!

Hi Chris

Sounds like good advice. I’m still struggling after a relapse in March. GP wants to give me steroids again but I don’t want them twice in a year plus I’m not sure the symptoms warrant them. I just want some physio really.

Spoke to nurse yesterday and she agrees that physio is a reasonable request and suggested trying a neuropathic painkiller. I’m already on amitriptyline so may need to try something else now.

Hope the increased dose of amitriptyline works for you. What dose were you on already? What will it increase to? I’m interested as I’m wondering whether to try increasing mine in the meantime to see if that helps. My GP is useless and it may be a while before I can get another appointment with him.

Tracey x

Hi Tracy, Only on very low dose of 20mg at moment upping it to 50mg but doing it slowly. Was on pregabalin but had to stop because I reacted badly to it. Amatriptyline worked for me up until now. Good luck, Chis

I’m on 20mg at the moment but nurse thinks I should try gapapentin. The amitriptyline was prescribed for burning but I’m now experiencing tight, cramp-like feelings in my legs. Not sure if amitriptyline would help for this. Going to try a bit of physio first

Tracey

I’m not really an expert, the pregabalin certainly took the pain away but I was completely spaced out on it and became a danger to myself and couldn’t drive on it. Going to discuss meds with the ms nurse on the 10th July. She seems to be obsessed with my bladder function but I’m more bothered about the pain. Anyway, I hope the physio works for you xx