Hi, I don’t know if this has ever happened to any of you, but one day last week I experienced a sudden improvement, I could walk better, faster (though on crutches this was by no means quick) I could raise my feet to get up steps better than I have in months, and even my handwriting which has been deteriorating steadily as my grip has worsened was almost as neat as it used to be. It was rather wonderful at the time, and I went to bed feeling very optimistic that maybe I had turned a corner, sadly when I got up the following morning I was pretty much where I had been before. I went straight to a diagnosis of spms in 2006 having been told for several years that there was nothing wrong in having had a number of unexplained falls, clumsiness and an episode of double vision. Anyone else ever had an improvement like this? I talked to my neuro specialist physio (I pay for this the nhs refusing physio) and she hadn’t heard of it, my neurologist has discharged me and I don’t have an ms nurse, my gp has only limited knowledge of ms, so maybe one of you out there can throw some light on it. Thanks.
I don’t understand why your neuro discharged you,or why you’ve not got an MS Nurse, or why they’re refusing physio when you have a progressive neurological condition. I’d be complaining big time x
My neuro discharged me a year ago, on the basis that he can’t (and/or won’t) do anything for me so there is no point wasting his time or mine! Presumably discharging a patient = successful outcome and probably ticks a box. I have asked for physio and been told it’s useful but not available on the cash-strapped nhs. The neuro did tell me I could ring the ms nurses 26 miles away - there isn’t one in the city where I live! However in my experience they don’t always return calls and I have usually been fobbed off when they do. The favourite being, “you might have an infection, see your gp” My gp appeared to be shocked when I was discharged by the neuro, and he is supportive but professionally they stick together don’t they? As for complaining, I don’t see the point, I would no doubt be fobbed off again, and having had to battle for what I have got from the ‘system’ ie dja, blue badge, crutches, perching stool and wheelchair voucher I don’t have either the energy or the inclination for any more battles! Sorry to ramble but once I started I had to get this off my chest! Thanks for your reply though.
I honestly think a neuro would be the best person to answer/explain why or how the situation in your original post came to happen?
Maybe worth querying why they felt it OK to discharge you, when you quite clearly still have questions and are likely to have further questions in the future?
I’m sorry, but this just smacks of making the neuro’s life easier instead of yours
Your hospital should have a PALS (patient and liasion service). In my experience, they handle things like this very well x
I had the same a few years ago,for 3 to 4 months, i could live a near normal life, i could walk more, i could drive and go out on my own,it was like my old life back,and then it all came crashing back down, and i was back to not being able to function very much at all,back to having to rest all day.every day,i looked like me again too,it reminded me just how much i was missing out on though,so for me it wasnt such a good thing really,but i made the most of it at the time.
Yes, I had something similar for 5 days last February.
I woke up one morning and actually had some energy, very little pain and my walking was almost normal. I got so much done and it was wonderful! By the time I got to day 5, I was thinking about going back to work again, but then I woke up on day 6 and felt like I’d been run over my a tank. I really don’t know what happened as I wasn’t doing anything different and hadn’t changed my meds.
It’s so disappointing isn’t it? Still, I live in hope that it will happen again!
I’m back in limbo land, but I have experienced what you talk about. Its like someone turned the power switch back on. Everything is brighter than normal… Its a bit like being high ( I think) its happened 3 times in the last 2 years and my husband says I am loud when this happens. Its excitng when it happens but tough when the fog decends again gill xx
Thank you all. I agree with you Dom, discharging me was for the benefit of the neuro. All things considered I don’t think complaining will help. As for the sudden improvement I live in hopes of it happening again and lasting a bit longer. Knowing my luck it will be when they send for me for assessment when I have to change from dla to pip!!
How does complaining not help? Poor service should never be ignored. This could happen to someone else, someone that doesn’t think to come online for support. What do they do? That’s my thinking anyway. x
I can’t help with your original question, but I do think you should fight for what you are entitled to and be back under a neurologist.
You are not alone - in not having access to a MS nurse. l have been SPMS for 31yrs - and have never seen a MS nurse. The excuse is l live too far from the ‘county nurse’ - whilst the one nearest is over the boundary line. l went 27yrs without seeing a neuro. But last Feb - did get to see one who actually did know something about MS - anyone else l have seen did admit that they did not know a lot about MS.
The neuro l saw the last time - did arrange for me to have a bone-density test - and to attend the Rehab clinic for physio. The physio has tried to get me an appointment for a FES - but 7months on the waiting list - still waiting for an appointment.
Did meet a chap at the rehab clinic yesterday. He was in a wheelchair - and we got talking. He has had ms for 19yrs - and admitted that he had given up ‘trying’. Watching me trying to do the exercises and getting about with my rollator made him feel perhaps he should be doing more. He could not believe that l am 66 - he thought l was younger than him - and he is 50.l told him l still manage to drive -[ automatic car] l told him how much LDN has done for me - making me feel more energised and positive. And he had never heard of it. He was feeling very low and obviously depressed. lf l see him next week l shall ask him if he knows about d3/b12 deficiency as well. My rollator got a lot of attention from other patients who were struggling to walk with sticks. Patrick on this site - advised me on the rollator - and it has made a big difference to my life. A couple of elderly ladies did try it out - and they were so excited about it. They realised how much more they could do for themselves safely. Even venturing outside of their houses. One dear soul - has her son living with her and he works nights. She said she has to wait for him to prepare her meals and see to the washing so having the type of rollator l have which has a large carrying basket and a seat would give her a bit more independance.
The physio l have been having has helped - and l am following up with the exercises. Also, the physio said she is waiting to go on a course about FES - so lets hope it is soon. What l didn’t tell her is that l paid to see a orthotist privately to be assessed for a WalkAide - and he could not get my foot/ankle to respond to the electronic probes. My foot drop has got much worse.
When you know that sometimes you can feel better - it does make you realise that there is HOPE. So lets hope it continues.
Have a good weekend everyone