No more support from MS team :-/

Hi all I’ve had MS all my adult life though officially dx in 1991 with benign MS, followed by SPMS in 1996. I was effectively discharged from my neuro many years ago, which was fine by me because I was still getting annual reviews with my MS Nurse, and the option to ring if there was a new problem. Last April, I couldn’t understand why my appt hadn’t come through, especially given that I’d fallen and torn ankle ligaments. I let it go for a while because we had a forthcoming family wedding in London, followed by an overseas holiday for my husband’s 60th birthday, followed by our annual ‘normal’ holiday with friends. During that time, my mobility has taken a nosedive with increased spasticity and pain, so two months ago I rang my MS clinic and managed to secure an appt with a new MS Nurse who referred me for physio. Physio consisted of one single asessment then a follow up during which I was referred to a local council gym for a ‘Positive Steps’ course. I haven’t attended that yet because I’m ranting inside that the MS Nurse himself signed me off. I refuse to be thrown on the MS scrapheap at the age of 56 because I know that there are pills available to help with both spasticity and pain. I had so many pain riddled nights last week that I bit the bullet and rang demanding an appointment with my MS Team. As a result I’m seeing the nurse and physio next Thurs. with my husband in tow for him to explain how this pain is affecting us both. I don’t quite know my reason for posting this - maybe I need to vent, but I just hope that no-one else finds themselves in a similar situation. Eiona

I must admit that I surprised that the phsyio only saw you the once and referred you to the gym straight away. I have a local day care centre that has a gym for disabled people or epople with chronic conditions. I was seen there by neuro physio on the several occasions that I have phsyio and they were really good and it took at least 6 weeks before they signed me off with the exercises that I needed to do at both home and at the gym… I guess that I must be one of the really lucky ones as not only do I have an MS nurse but I also have what is called the Community Neurological Team, which has: neuro physion, OT, Speech and Language therapist, Continence nurses and psychiatric nurse as well. I know that I am really lucky to have this kind of support and i find it very difficult to hear about other MS’ers who really suffer under the NHS post code lottery. I don’t blame you for ranting and raving at all, it seems to me that you have been badly let done by your local NHS services. It is an old cliche I know, but those who shout the loudest and generally make a pain in the arse of themselves are the one’s who get seen the quickest. I hope that the MS clinic appt will really be able to you, especially with the pain and mobility issues. Andy

[a=150][a=#BF0000]Eiona, You shouldnt have to suffer in almost silence like you have. Yes there are things for spasms and pain control. Baclofen, amytriptyline, gabapentin etc. Each neuro has their own prescriptive preferences however if your not seeing one then you either need a very good gp or have regular contact with your ms team. Fancy having to demand to be seen. I would ask why that was the case once there? Sounds like you have been forgotten along the way for some reason. I do find myself that shouting very loudly gets things done however msers shouldnt have to do that. In each area I always assumed there were lists of people suffering ms, so ms teams know who the sufferers are and organise care accordingly. Alas no such information exists. Years ago our council wanted to know whether to keep special schools open as they didnt know the number of kiddies likely to be accessing them. When asked why they didnt liaise with the hospitals to get a rought idea they said: oh we never thought of that one! Afraid as in life you might have to be a trailblazer in your area. I do hope some help is forthcoming and you finally get some relief from your pain. We are here for you, bren xx

Thanks Andy I’ve never ever had cause to complain the the past, in fact I’m the one who always praised my MS Team to the hilt on this very forum. As for the gym referral - how ironic is this? I’m a fully paid up member of a private gym where Huw and I go swimming regularly, though that’s been on hold because of various other things since my ankle healed. I just put this as my FB status …‘I can be changed by what happens to me, but I refuse to be reduced by it’ ~ Maya Angelou … I’m not giving in without a fight over this, as weary as I feel. Cheers Eiona x

Thanks bren - sorry cross posted. I was going to add my bit to your own posting yesterday but didn’t feel it was entirely the same situation, yet there are similarities Eiona x

PS Still getting used the the new forum here lol! Meant to add that I currently take Clonazepam and my former MS Nurse, a year ago mentioned a change to Baclofen - so fingers crossed x

Hi Eiona, I wonder if you’ve actually said that you wish to maintain routine appointments, and also that you are interested in exploring treatments for symptom relief? As MS doesn’t go away, and you certainly still have it, I can’t see why you should have any less right to access services than anybody else! But I do notice (from my own experience, as well as reading these boards) that the initiative often seems to rest with the patient. I’ve never, ever been assigned an MS nurse. It seems to be up to me to make a fuss, if I decide I want one - I don’t have routine appointments or anything. None of it happens automatically. I also had a bit of a fight on my hands to get baclofen (for spasticity) because that wasn’t offered automatically, either. And I made private arrangements for physio, because I was never referred for any, despite being told I would be! I’m not defending it, because I don’t believe it ought to be this way. But the reality is that it is, in many areas, and you have to be your own advocate, and not wait for what you think should happen, because it probably won’t. :frowning: In a way, it works for me, because I’m not a fan of routine appointments, just to check how I’m getting on. I think it wastes my time and theirs. But I do worry about what happens if I’m not well enough to keep chasing people about stuff I want/need, because I don’t have any partner or carer, and don’t think the NHS would ever contact me, if they didn’t hear from me first. All the best, and I hope you get something sorted out. Tina

Hi Tina

I wonder if you’ve actually said that you wish to maintain routine appointments, and also that you are interested in exploring treatments for symptom relief?

Yes, I did in fact and my husband was with me to witness it. I asked for 6 monthly reviews and a medication review, at which point he said I didn’t need to be seen, also suggested that Clonazepam is useless then went off on a tangent about Cognition Issues in older people. I left there with a web address for Cognitive stuff - I recognised the text immediately…and I’m ranting about that too. The phrase ‘Physician heal thyself’ springs to mind Eiona x

Eiona, I had a few problems when I got a new gp. Went mad when everytime I saw a different one I had to explain what ms was! Finally lost it and he promised at least 3 gp’s would update themselves and be available should I need help. He needs a jolt once in a while but to give him credit hes now testing my bloods for vit.d3 levels and follow ups every 3 months. My son laughs saying: have you told the gp again how to do his job? Its so tiring having to do all the running but I always think for the younger ones perhaps we are laying the foundations. Topic yesterday - interesting replies. I do think though there is a great deal more disparity than any one mser thinks. One day maybe all will be equal? Take care, bren x

Hi bren Thanks for the reply. I found your comments about GPs interesting because in the past I had a very good rapport with all of mine. However in the past year, those GPs who knew me and my MS and learned from me (yes I know it sounds big-headed, but one in particular used to ask me for info so that she could deal with other patients ) have all retired, so I’ve lost that support network also. Watch this space as the saying goes because no way will I give up, nor give in. As you say, there’s a great deal of disparity amd I’ve spent a vast amount of time, on and off the web, trying to get this message across. Eiona x

Hi Eiona, You go in there fully armed and insist on getting the treatment you deserve!!! (please read my post ‘good neuro visit’ on PPMS board). It’s a case of taking control and getting what you want (hope that doesn’t sound arrogant… it’s actually taken me nearly 6 years of shoddy treatment to work this out). Good luck hun… and really hoping they can get the pain under control ASAP. Yes there are plenty of drugs to help and it’s appalling that you have been suffering without help! Take care and please give us an update after appointment. Pat xx :slight_smile:

Hi, having a vent can sometimes help…the one certain thing it does, is to let others know we are all feeling the same from time to time. ive given up expecting to see my latest neuro again. Saw him in Feb...he talked the talk and vowed to sort out a definite dx for me....Ive chased him 3 times and simply cant be bothered now. Ive got all the drugs available for PPMS and feel as miffed as you are. I find baclofen helps with painful spasticity and spasms…about 80% of the time anyway. Good for you for demanding an appointment…hope you get some satisfaction. luv Pollx

Thanks Pollx - fingers and everything else crossed as long as they move lol! Hi Pat, Just read your ‘good neuro visit’ posting in PPMS forum and got an earworm of Mr Punch saying ‘That’s the way to do it!’ lol! Glad it went OK and I shall certainly go in with a set list in a logical order. Thanks Eiona x PS it’s ‘Pregabalin’ otherwise known as ‘Lyrica’ :wink: Hope it works well for you.