Hi I am my husband carer and know how hard it is to get help for those who struggle with Secondary progressive M S, my dilemma is always the same. I have posted my worries a few time on care/support forum to no avail. When my hubby was diagnosed with benign m s he was 54 a year later he had a few bad days off his legs, flue symptoms, he was very poorly gp very reluctant to come out, I struggled to get him in and out of bed to toilet M S nurse shut or on answer machine , etc. Anyway doctor came gave him some meds 3 days plus 3 months of new symptoms consultant said he now has secondary progressive. gabapentine prescribed 2 yrs ago he’s now on 900 3x a day. He’s no better on it to me, as secondary progressive says he gets slowly worse each day.
Second to that over the last few months he has episodes of blank, he stares, cannot hear me, has terrible headaches/tooth pain after, looks ill, but he wont let me ring for M S nurse he says it will go away. It does but this last month he seems to have these episodes more. Last year I was so stressed because hubby wont go out because he may need the wheel chair, or he says his eyes are dancing and his co-ordination is poor and stops in nearly all the time. I had a bad breathing episode/throat closed up and I could not shout to get him up/I got my breathing under control and had a harsh voice/seen doctor who complained that I should have rung for ambulance. Explained hubby has M S, (when Steve is in his episode state, nothing and no one exists I could collapse and he would say I was trying to trip him up.) The doctor phoned his M S nurse telling him my worries only for them to ring him and say I had been moaning about him and what was up. (disaster for me not allowed to talk to anyone anybody his state. I some times him a meal and he says I am trying to give him food he hates. Hope someone is getting where I am at, my aunt says some M S patients have tongue problems some numbness which might explain the food issue. He gets agitated with noise, just before and after his episodes he says I am shouting when I am not. I also have disabilities and worry about ways forward. How do I help him, get better medication and keep me safe? Carolxx