Earlier in year I was doing really well with a neuro physio. unfortunately I had all my alloted sessions. My back started being painful again so I was re refered to physio by my GP.
Requests are triaged and I was sent appt for regular physio. Lovely girls but no experience of MS. Weeks & weeks later and Im still in lots of pain.
Has anyone else had the same probs accessing neuro physio. Also how can someone with MS be deemed fit & discharged anyway. Surely we should get long term neuro physio…?
Do you have a phone number for the neuro physio you saw before? perhaps they could tell you how to get referred to them again - or your MS nurse (if you have one) could help
Thanks Floopy (great profile pic!) but Ive tried both and the triage system here still stands and they are addament that back pain is musculo skeletal and therefore not neuro (twits!). Its pathetid but I have to complete full number of appt with physio and then GP can re refer me again. On the first referall My GP even quoted my neuro physios name and said that I had back pain with him but he was able to stop it (temporarily) long enough to be fit for excersising.
Honestly Its sooooooo frustrating but thanks for your reply.
Have to say though this is my first argument with the NHS as theyve always been marvelous.
I wish you luck, be aware that not all pain is MS, I have a crushed/fractured vertebre (probably spelt wrong) L1 but hey! they can’t do anything about that eitherTake care M
Hi
You don’t say what type of pain.
It may be MS nuropathic pain you are suffering from, which doesn’t respond to conventional pain killers or physio.
If you have one talk to your MS nurse and if possible your consultant.
No affence to GPs or Physios but not everybody recognises nueropathic pain. which is common in MS.
I know because I was suffering from it for nearly 2 years and it was getting worse.
MS nurse got me an emergency appointment with consultant who perscribed Gabapentin and in a few hours, aaaaaaahh the relief
There are a few different drugs for nuropathic pain, what works for one person doesn’t neccassaraly work for another.
It’s just a thought but it may be worth exploring.
Ronin.
Hi,
Gabapentin is good stuff.
Problem could be caused by all sorts of things, try a physio who looks at how you walk. Bad posture often causes back pain. If your balance is dodgy then yopu are frightened of falling over backwards so you lean forwards and if one of the legs is not good then posture goes for a burton
If you live near Chilterns in Bucks, Aylesbury then there is a really good place http://www.chilternsmscentre.org/.
NHS is a bit of a pain. Referral and being discharged and being referred again. Lack of continuity and peole who do not understand MS. Moan at MS Nurse or neurologist
Good luck,
Patrick
Hi,
When I was first dx I saw a neuro physio twice, given exercises to do and that was that. No follow up treatment at all just a sheet of paper with exercises to do. So I guess the answer to your question is yes you are discharged, but there again it depends on which part of the country you live.
Sorry it’s not better news from me and hope you get somewhere quickly and get sorted out so your pain eases.
Janet
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