As you know theres not a lot Neuros, MS Nurses etc can do for pwPPMS and after 2 years Im starting to realise what a waste of time it is going to see these people. However, I am starting to think that I should be building a history with these people so that when my PIP interview comes around I will have something to show. At the moment, if Im ill I cope without telling anyone, unless I need anti-biotics.Ive never seen an MS nurse. I only claim DLA but tbh would be lost without it. Thanks, hope everyone has as good a New Year as possible.

I know what you mean I to am PPMS and see my neuro once a year but I know can contact if I need steroids etcc but as you sayi agree you need some sort of history for PIP, DLA. Happy new year x

Hi, I spent quite a few years in the PPMS camp.but just last Oct, was told it defo is not MS at all, but an equally disabling and incurable condition.

but as regards it feeling pointless to keep seeing neuros, when theres little they can do to help it, i feel it is important to keep your appointments, as you never know when there may be an alternative treatment for its symptoms.

plus I think it is imperative (oo, that`s a posh word for a tuesday lunchtime) to have up to date records for the wonderful DWP.

many folk here have been discharged from neuros lists, so that could make claims harder.

luv Pollx

I’m SP so I know what you mean HOWEVER – who knows what’s round the corner, new drugs are being developed all the time. When I was first diagnosed with MS there was nothing for anybody but thousands of people benefit from DMDs now. My thinking is that I want to be known to neuros etc and be toward the front of the queue if anything becomes available for progressive people.

I think perhaps we are a bit spoiled in Leeds compared with what I have read about other areas. We have an adult neurological team to whom I was referred by my MS nurse. They have provided lots of help and support in various ways. We also have a specialist MS physio and I got a lot of help from her.

I get your point about PIP – it’s in my mind too. It can’t hurt to have medical professionals know what the state of play with you is. For most people its just once a year (maybe 2x if you’re progressive) my vote is to go along with it and smile sweetly when they send you on your way with nothing.


i am spms and only go to see a neuro once a year just to keep me in the ‘system’ so i can have a letter stating that i have spms

for when the dreaded brown esa letter drops through my letter box,i feel like i am wasting my time and theirs,when i do go, its just a chat for 5 or ten minutes until the next time.

I agree keeping in the loop is a good idea and it allows students to prod me about a bit if nothing else. Mind you, I would be seriously worried if he prescribed steroids for my PPMS.

Well I’m not worried and do havePPMS and have had steroids on a number of occasions, just wondering why you would be worried?

My understanding is steroids only speed up recovery from a relapse that would happen anyway in time (if they work). I don’t get relapses so can’t see the point and get to keep my bone density instead.

Obviously, you are given steroids for a valid reason and glad to hear they help.

I too have PPMS and understood the same thing as Derek - that as I don’t have relapses steroids won’t help. Teresa xx

I don’t have relapses either but have been given them over the years, it was to try and give me some relief of some severe symptoms, I didn’t think they worked particularly well, it was a lot of years ago and I’ve not had them since but my neuro would give me them again if I needed them, in fact only last year he offered me them but I declined and I wasn’t having a relapse.

Hi yes I agree with your original post. I do find the MS nurse more useful than the neuro .

She is qualified to alter my doses of for example, baclofen so it can make small differences. It also enables me to get referred for physio which again does make a difference, although I can’t do too much compared to what I used to.

I was thinking the same about PIP/DLA etc the other day and at least I have some info to provide. I insist on a 6 monthly visit.

As others say, give it a go, just don’t expect too much!