Have come on to have a moan, is all I seem to do at the moment.
Have seen the MS nurse today for the first time and they were about as useful as my right leg is. I am currently signed off work for 4 weeks as I had become so fatigued and felt so unwell, it was like a vicious circle. the physical symptoms exacerbating the fatigue which in turn exacerbated the physical.
I was hoping the MS nurse could bring forward my neuro appointment as I have new symptoms on my left hand side, which differ from those on the right and where all my previous symptoms had been on the right.
I have developed bowel difficulties and my walking, bladder and mental impairment are getting worse and my feet are excruciatingly cold.
He is not though going to bring my appointment forward and says while the symptoms may be new to me, they are more than likely due to the neck lesion. When I questioned what would change when I saw the neuro in October as he was not planning on doing new MRIs, and would I still be left with no answers, he said ‘probably’.
He also didn’t seem to like me saying that I felt abandoned and left to get on with it, with little guidance, treatment or medication and got quite sarcastic.
I don’t understand how they are ever going to be able to tell if I have MS or not without doing new MRIs and what, if new symptoms do no prompt them to do this, will make them consider doing new MRIs.
My walking has become worse and worse and when I asked why this would be, as surely if the same lesion was responsible, would it not level out or show some improvement rather than worsening, he said, ‘it can be a bit of a roller coaster.’
He has given me a prescription for pregablin, & will do a referral to the continence nurse, which I know will do no good as been down that route before, and also for physio which I also struggle to see how that would help with heavy, tired, aching, weak legs and foot drop. Might just be that I am a bit of a downer though.
I left in tears and really don’t know what to do next.
Sorry for the moan, trying not to stress my son as he is doing his A levels.
Thanks for listening
A sad and sorry