I was diagnosed with PPMS back in 2010.
My original symptoms was pins and needles in my right foot after running for 20 mins on a treadmill and optic neuropathy that originally I thought was some sort of retina problem, but the eye specialists said my eyes were fine. Being an IT nerd I started reading up and suggested I might have MS. Which the neurologist laughed at. But he did tests and a lumbar puncture and then announced that I have PPMS. Bugger!
In Jan this year I had a major event that meant I couldn’t lift myself off the floor for two days. And from using crutches to get about bought a wheelchair. Again reading I saw something about PRMS and got an appointment with my MS Nurse. Who basically said I was silly and probably had a urine infection. So got my GP to do some tests…nothing wrong with my waterworks.
I’m now so bad I’m permanently in a wheelchair, but as I work I’ve been told the council won’t fund any adaptations. So have been living with urinal bottles, a commode (all bought by me) and might struggle holding my whole weight on stair bannisters to get upstairs to do my bowel routine every three days, and then be able to sleep in my own bed. So much my five year old gets put out when Daddy wants to sleep in his own bed. I’m virtually housebound, which is difficult when I work, only with getting over the steps at the front and the back of my house by having to fall in our out into a second wheelchair. But applying to the council they say I’d need to fund a £38k loan before they’d even help with a penny!
I’ve gone from the strong one in my relationship, to the dependent. And my girlfriend doesn’t like that.
Falling down the stairs twice my GP demanded I see my Neurologist. So I saw him, and even though he seemed to be falling over himself to help some 80+ year old in the waiting room, even calling in some social workers to help her as they wanted to give her morphine (pah pain! constantly in it and just deal). And then she walked off, no stick, no wheelchair, just a normal 80 year olds gate!!! My appointment I felt I was being rushed out. Suggested he would admit me to build a case to help me get funding, but no beds, so assume that won’t happen. But because I had a list I said about relapses, so he gave me s five day course of steroids.
And just after one dose I felt amazing. Bit light headed. But I can stand. I can get up the stairs when I want, I answered the door to the Postie standing when normally I have to ignore him or crawl to the door and greet him sat on the floor (just a bit demeaning), I can pee like a racehorse, I can do s number two, I can fart (God I’d just forgotten about farting and when I realised I could do it again was a surprising victory), I even manged a shower, yes my legs are weak but sitting in a wheelchair for the last year is going to cause loss of muscles.
Now as far as I’m aware steriods don’t do anything for someone with PPMS! Was I misdiagnosed? Do I have an aggressive form of Relapsing MS? If I’d been on drugs to handle relapses might I still be running, no stick, no crutches, no bloody wheelchair?
Should I be seeking legal advice and sueing somebody? My life is likely ruined, and you can’t get your life back. The only reason I’m still here is I didn’t want my daughter to grow up with no Dad. A crippled Dad is better than a dead one. But should I be this disabled? I’m elated to have some function back. But that’s tainted by ‘what if’, I’ve had five years of “you have PPMS, so there’s no treatment, better get used to fading away”. But what if doctors have thrown away my life because they couldn’t be bothered?
Sorry for the long rant. But I’m at my wits end.