Hi - I was diagnosed 8 years ago. My legs have become increasingly weak, the left being worse, paraparesis. I feel as though I've just enough strength to allow me to walk my dog. Distances I can manage are getting shorter. Hate the thought of a mobility scooter. I feel so unfit because my legs won't allow me to move beyond very slowly. This wouldn't help re breathlessness. I'm convinced that there are many more symptoms directly attributable to SM, than clinicians realise. I'm a grandfather of 3 and hate that I can't do anything physical with them. I feel for you when it's your own kids.

It was increasing weakness in my legs that first alerted me that something was wrong. I had severe tingling and numbness in my feet for about 8 years before I was properly diagnosed. Nobody ever thought about doing a whole spinal MRI before until a local Orthopaedic Surgeon requested it as my symptoms just didn't seem to add up. Then last Christmas, bang, the spinal MRI showed up a syrinx in my cervical spine plus two severely degenerated disks in my lumbar spine. Things have moved on rapidly since then. SM is a cruel debilitating condition for many of us. I have been told that my eventual prognosis is total paralysis from the waist down with double incontinence and no sexual function. Really doesn't get much worse!

Hi I have a syrinx on t9 and a hair line one a bit higher up... I now have tingling in my fingers and hands, and numbness at times... I'm left hand so in theory it should be the strongest, but its the weakness. my left side seems to be affected more than my right.
Unfortunately because it cant be seen and health professionals say its rare, not many people understand what we experience. when I saw my new doctor due to moving to a new town, he lectured me about wanting strong pain killers!!!.. the truth being I hate taking them so only take them when I cant cope with the pain. lucky my husband was with me and put him straight.. I used to swim for 2 hours then walk 10 miles... not any more...

Hi,
Iv'e just joined DS, and I'm getting a sense of relief that other people are going through similar feelings/pain that I am (although it'd be nicer if none of us were!!)
I was diagnosed with SM in June, after 3 years of back pain and funny feelings all over. I find it very difficult to describe my pains so it's helpful to read through the comments here.
I've had decomprssion surgery in the past few weeks but my back pain and right arm weakness seems to be getting worse.
Hot baths, heat packs and sometimes sleeping tablets have ben my evening routine for a longtime now, but it gets me very down during the day.
Anyway, Im looking for advice on pain relief. I know that there no drugs that relieve the pain, but has anyone tried physic/ deep massages/ dry needling? If so, did it work and is it safe to do so?
I sympathise with everyone in this forum.. It' touch to go through the day with a chronic pain. Hopefully w can help each other here.

Hi Ledwala,
Gabapentin 300 mg three times a day has helped to reduce the neuropathic pain caused for my post traumatic syringomyelia pain. Good luck.