Hi. I am at a stage where I want to find some drug to help me with my symptoms. I think my ms has gone on to SP but I haven’t been told officially - I haven’t had a relapse for a couple of years but I have symptoms every day, good and bad days, and so on. My main problems are constant pins and needles, slow difficult walking, spasms in one leg that are sometimes very strong and almost make me fall as my leg gives way, and occasionally stiff ‘tin man’ legs that I believe is spasticity.
I deal with my MS largely on my own (as I know a lot of us do) as I see a neuro only once a year, and all he does is note down that I am still alive. My MS nurse is beyond awful. I have been going to the doctors over the last few weeks in an attempt to get a referral to a different neuro at a hospital closer to my home and also to try to get sativex as I am keen to try this. My doctor always says she is waiting for others to contact her before she can do much - the useless MS nurse who was supposed to sort out my drugs and neuro months ago, the neuro, the other docs at the practice.
Recently my doc has given me Baclofen for the spasms, but I found it made no difference to my symptoms but did make me incredibly tired, so I stopped it. She then gave me amitryptilene to try - I took it for a few weeks and built up to two tablets at night. It helped me sleep better (I wake up frequently) but it made no difference to my symptoms, and I found I was experiencing awful urinary retention. I stopped taking amytrip and my bladder got better.
I presently take tramadol every day, which makes me feel half human and I couldn’t do without, and ropinarole for restless legs, which has also been great. But I really want something to take during the day for my spasms and occasional spasticity.
What should I ask my doctor to try next? I would like to hear people’s opinions on whether pregablin, gabapentin, sativex etc would help me. I particularly want to try sativex as I believe I could take it for quick relief when the spasticity strikes rather than being dosed up constantly - is this right?
Also, does anyone buy sativex privately? I used to buy LDN this way, but gave it up as I was still getting worse. I live in the West Mids - does anyone know what sativex access is like in this area?
Thanks in advance for any advice!