I saw my new consultant last week. The nice man told me that as I have a progressive form of ms, although I am not “typical” there is no point seeing me for an annual review. He will see me once more in 12months (if the appointment comes through, which itself is debateable!) otherwise anything else relating to ms I am to ring the ms nurses. My experience of them in the last 6 years is that if they bother returning my call, once they know I am not on dmds they lose interest and fob me off with “you might have an infection” He did actually acknowledge the benefits of physio but says that is not on offer. So far since diagnosis - I have bought walking sticks, rollator, wheelchair (all of which the nhs could have given me) I have had no help in adapting my home, other than a rail at the back door. I am paying for physio. I pay for a cleaner. I have been given elbow crutches,and a foot brace and a perching stool, which came about as a result of a fall which saw me carted off to A & E. I have been refused an assessment for help at home, even though I cannot live independently. So that’s it I am officially on my own! Except of course for my fantastic husband who has taken on the burden of my ms with good humour and without complaint. I worked full time for over 30 years and made few calls on the nhs and none on social services and whilst I know little can be done for me, it would be nice if what could be done to help would be done.
Hi Flowerpot Yep! that’s about right, we are on our own. They can do nothing for us so they do nothing! Progressive MS we are not interesting, they are wrong, I think they could learn a lot from us and how it finally gets diagnosed as Progressive. Am I bias? You always have this forum. Take care, fight to maintain as much of ‘you’ as you can. M
all sounds familiar except ive never been allowed to see an ms nurse.once a year i see my neurologist who is useless/.dont evenknow who my gp is as i never see him saw a gp years ago who told me he knew nothing about ms so thought sod em.we are on our own and i think it makes us stronger .one day we might be treated as equals with regard to treatment options but till then we must keep chipping away at the nhs,ms society and the relapsing remiting lot reminding them that we matter too and like any minority we wont just lie down and shut up andy x
Hello flowerpot! I can well understand your feelings of isolation as if no-one cares. my last neuro promised to get me a dx once and for all, after 14 yrs of being in virtual limbo! I saw him in Feb and have heard sweet fa since! You say you dont qualify for help. What about Direct Payments? I began using this method of help and it working out really well. I first looked at trying for this a few years ago. But hubby wouldnt hear of it. I finally persuaded him and he is enjoying the break it gives him from looking after me 24/7. If you want to ask me anything about it, please do. luv Pollx
I have often wondered if I ‘distanced’ myself from the MS nurses and the like. I lead a busy life as a teacher (despite the pain in the leg that is MS that causes me a huge problem walking) and want to teach for as long as possible with as few interuptions as possible! So I told the MS nurses I would contact them when I needed them - the two appointments I had led to nothing and didn’t do anything but waste time. I have found the most help from my gp who sorted me with a crutch pronto when it was recommended (got it within a few days) and the physio who got me the crutch (who also got a rollator delivered to me within 2 weeks just because I asked for it!)