Forum

Dont know what to do

Hi All I was diagnosed end of July and was put on Gabapentin at the beginning of October when I felt I was ready for it as things were starting to get me down when I couldn’t stand not being able be my old self. A couple of weeks ago things have gone down hill and I feel like I am now worse than I was before I was diagnosed. I spoke to my ms nurse who says I could up my dose of Gabapentin as it is a low dose. I do not like taking tablets as I find it very hard and I would prefer to cope without. She said if I did not want to do that I could try resting more. I have been doing that but to no avail. I am really wondering if anybody else has experienced this without uping the meds. I would be really grateful for some help and advice. Many thanks xxx

hi hopefull

i was diagnosed 5 years ago and i have taken the meds, built up to highest and cut them down again.

to be honest, i felt like i was poisoning myself with pills. i know thats daft but thats me!

do you go to a ms therapy centre? there’s a lot on offer.

i have had mindfulness meditation courses which help and don’t involve taking pills.

hyperbarric oxygen therapy helps but i’m full of a cold (again) so i cant go or else it will be painful.

i’m hoping to carry on with the hydrotherapy that i had a course of last year.

i can’t have another course because there are too many people who havent had it yet.

however the neuro physios who ran it have encouraged those of us who don’t need a hoist to go alone to a hydrotherapy pool. luckily i found the phone number of a lady i met on the last course so i can set about organising it.

there are alternatives to meds on offer but you need to know what they are and where to get them.

i have also tried LDN but havent got a prescription any more.

a lot of people with ms swear by it. google LDN Aware to find out more.

its not available on the NHS so you need a private prescription. it isnt that expensive - about £15 per month

so you need to get researching.

i take one amitriptyline and one tizanidine in the evening and thats it for my neuropathic pain killers.

having said that my legs have been killing me today.

i really hope that you find a balance between meds and alternatives that suits you.

good luck

carole x

Hi, if you can manage your symptoms without medication, then fine.

But if the answer is no, maybe some of Carole`s advice would be useful to you.

I dont have MS, but something very similar and equally as disabling and some of the treatment is the same.

ive been on lots of meds for years and am now in the process of trying to wean off some, as ive had a higher liver function test than normal. Hence my wish to drop some meds.

I have already dropped oxybutynin (for bladder urgency), as I now have an spc. I have also dropped quinine (restless legs).

I will be trying to do the same with baclofen in a few weeks.

I have done all this with my GPs supervision, as I wouldn`t do it without.

I think there are some members here who dont take any meds.

Hopefully they`ll be along soon, to tell you about it.

pollx