Since I got my diagnosis, which was about a year after I was first referred to a neurologist and several years after I had symptoms. In that time I have been told by three neurologists that my ms is “mild”. The first time I heard that I was mightily relieved, but now realise it means nothing, and their idea of mild is rather different to mine! I was also told it could be twenty years before I needed a wheelchair. I’ve had one for seven years now, and at first just used it for shopping etc but over the years have become more and more reliant on it. The only place I walk now is unsteadily, slowly and with difficulty around our bungalow. I can’t self propel on carpets, so am trying really hard to stay on my feet. I can no longer drive. I can’t live independently, struggle with cutlery, buttons, hooks and eyes, that sort of thing, and am now struggling to get in and out e.of bed without assistance. I can’t make a meal, or a hot drink, can’t safely manage the kettle now. My husband is my sole carer, we don’t get any help, so he never gets a day off, fortunately he has taken on the burden with good humour and mostly without complaint. We have no family, and most of the people we thought were friends dumped us after my diagnosis, presumably either because they were afraid of being asked to help, or were embarrassed to be seen with someone who lurches around like a drunk! We do have a gem of a lady who cleans for us, but she is 65 and i suspect will retire soon and I don’t know how to go about replacing her. In that eight years the first neurologist was abrupt and disinterested. The second was an ms specialist, and the first couple of times I saw him was a rather more positive experience. He talked to me, and listened to me, and arranged for me to see a physio, an OT and an ms nurse. However that was the beginning and end of any contact, help or support from any of them. I was making a 100 mile round trip to say, i’ve got worse, to get the response, I still have nothing to offer you. Whenever I asked about medication, the standard answer was, you are better off without it. How could he be so sure without trying? I then asked my gp to refer me back to my local hospital, which is only a couple of miles away. I then saw neurologist number three, who also trotted out the word “mild.” He saw me twice and discharged me on the basis that he can’t do anything for me, so there is no point wasting time or nhs money on any further appointments. Presumably discharging a patient is a successful outcome so ticks a box somewhere on the nhs paperwork. I did ask about physio, and he conceded it was helpful, but not available on the nhs. So I pay for that once a fortnight, and thank my lucky stars I can afford to. He advised me anything ms related to ring the ms nurses 26 miles away. There isn’t one based in the city I live in. I rang out of curiosity to ask what they can do if the neurologist can’t do anything, and the answer seems to be not very much! I’m fortunate I am not in pain and I do feel well. I’m sorry about the poor, neglected, badly done to me nature of this post, but I really needed to get this off my chest! I know there are many people worse than this, and although it helps me keep things in perspective that knowledge doesn’t actually make me feel any better. If anyone had got to the end of this post without becoming terminally bored thank you for your time and patience. I’m off to pull myself together, get showered and dressed and get on with life. Have a good day! xx
hiya
i have just made to the end of ur post.
come here…raises left arm…come in for a hug…
ellie x
Hi Flowerpot
It seems to be a real postcode lottery as to the type of service available to anyone with ms. It’s a pity we couldn’t win the real postcode lottery and could afford to pay for the very best treatment available.
The first neuro I saw was so rude and abrupt, because he couldn’t see anything wrong he thought there was nothing wrong. I was then referred to my current neuro who is fantastic, and also have a lovely nurse.
I guess I am one of the lucky ones.
Anyway I’m sending you big hugs
((((((((((HUGS))))))))))
Freckles xxx
Hi Flowerpot
You have been badly let down by some very poor professionals. Surely, if they all felt your MS was ‘mild’ and yet you were becoming progressively worse then you either had PPMS (ie not mild) or active RRMS and warranted DMDs. Some neuros would have ordered an MRI scan to show further lesions and proven a case for treatment with DMDs.
Five years ago I was also told my MS was ‘mild’ and have come to realise that they trot that line out as some kind of reassurance because I have now realised that the relapse which led to diagnosis was anything but mild! However, the positive for me was that I immediately qualified for DMDs as I had had two significant relapses within 3 months (having had no major symptoms prior to that). I am now on second line treatment (Gilenya) as I had two relapses within 3 months again last year. I do have some problems with walking but I can still walk reasonably well.
If only you had had the same kind of care and treatment at the outset you could be telling a different story now. Not everyone responds so well to the DMDs but you will never know, thanks to the lack of care you have received.
I can only offer you <> too. You sound like an incredibly strong person and I’m sure you and hubby will continue to deal with whatever life throws at you.
Tracey xxx
Thanks Tracey, without boring you with more detail I went straight to a dx of SPMS, which means DMD’s were never on offer. Very convenient for the nhs, which I also consider to be ageist. I was almost 50 years old when diagnosed, and sometimes wonder if I had been 29 instead of 49 if the response would have been better or at least different. Oh well, as me and hubby often say, we like a challenge! Thanks for hugs xx
Hello Flower, can I ask your name, as I`d like to call you by that, if you dont mind hun.?
I didnt get bored by your post......not at all. My own story is also long and some may find it boring, but lots of folk here are my buddies and I am an honourary member, as i dont have MS anymore! I was wrongly dxd with PPMS for a long time.
I always find it incredible that people with a definite dx of MS sometimes get discharged from their neuros. I really dont get this. What if there is a new drug or therapy they could be offered? it`s all wrong to me.
I am still under the neuro dept of our local hospital. In the beginning my GP sent me to a neighbouring authority as she thought their neuro dept was better than ours. Mmm, the jurys still out on that one! But as it was a 50 mile round trip and they did admit me for 2 separate stays and it was hard going for my hubby, I changed to my local hospital.
Like yours, my hubby is my main carer. He did it all on his own for 11 years and wouldnt hear of me getting extra help in. But his rheumatoid arthritis was progressing and I felt awful seeing him wince in pain when helping me. So going on 3 years ago, I did arrange help via Direct Payments. This is a wonderful help and neither of us would want to be without it now.
Would it be of interest to you?. From reading your story, I think it could help. If you`d like to know anymoe about it, please ask me. You can pm me if you like.
luv Pollx
Hi it does seem to be a postcode lottery. I can’t complain I never had a symptom until may last year and my ms has been a whirlwind since then never giving me a break but on I’m on first line treatment. Looking at second line. I personally feel it’s overwhelming. Lots of appointments none make me feel any better. Polls advice is always great. Maybe something you need to look into. I can honestly say being younger did help and holding a 4 month old baby infront of them speeded things along and I see my neuro and ms nurse regularly. X
Flower - your MS does not sound mild - mine is mild, no drugs and still dancing. Compared to yours - I would say definitely your doc picked the wrong word.
It does seem to be the luck of the draw but you seem to have had nothing but bad luck. Its disgraceful the way they seem to have washed their hands of you.
I will add my ample bosomy hugs to your list (careful you don’t suffocate )
Take care hun
JBK xx
hi everyone
well i dont realy no what i can add that hasnt bin said time and time again, Im dxd 2 yrs now and havnt had a break yet, I was told its a 20 yr thing from ok to wheelchair ,Iv had 2 diff dmd both put me in hospital pain off the scale. hay ho life realy does throw some curve balls ay.
i send lots of hugs to all my fellow friends and as long as we have a forum your problems and rants will b listened to and understood, so dont think your alone.
love paula xxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxx
Thanks for all your good wishes and hugs, and I’ve not suffocated! Perhaps I should have made more fuss. I know the nhs doesn’t have a bottomless pit of money and has to prioritise, but i’ve worked for over 30 years and enjoyed good health so have made few calls for its services or resources, and am more than a little narked that I have been so readily fobbed off.
hi flowerpot
i’ve had excellent service from my neuro and ms nurse.
i live in greater manchester and attend salford royal hospital.
it’s absolutely wrong that you havent had any help.
carole x
Hi, what is your GP doing for you…it is his responsibility to ensure you receive appropriate care and that your longterm neurological condition is managed according to NICE guidelines. Your treatment has being appalling if not negligent. Make an appointment with your GP telling him how you have not being managed. I changed my neuroconsultant following advice to do so from my MS nurse…treatment initiated straight away and now attend an MS clinic that I did not know existed!MY GP has being fantastic and done all the leg work.
My GP is aware, my neurologist wrote to him to say I was being discharged. He seemed shocked but didn’t pursue it. I see him only rarely, in fact I’ve seen him only once in the past year, when I met him for the first time, my old one, who I had a good relationship with and was supportive, retired early last year. I a battle to get DLA, I had a battle to get a blue badge and I don’t have the energy or inclinations for any more battles, other than to live life as fully as I can,
Hi Flowerpot,
We’re all good listeners here and welcome all stories, long or short, when youre happy or sad. Its important you offload and let off steam. Im sorry to hear you are having a tough run with the neuros. However, you are not alone. Like you say they seem more concerned with cutting corners, counting money and ticking boxes. Alot of patients are having to fight, long and hard to get things done. Me included. Its ridiculus.
You mentioned how you try and keep things in perspective when you are down, by remembering there are people in worst health etc. You are right, it doesnt make any difference, it doesnt help at all, especially when you feel neglected and short changed by the medical world. Like Jelly Belly said, your MS does not sound mild, especially when you have a need for full time care. No wonder you are miffed.
On the bright side, I am so glad you are not in pain right now. At least thats something to hang onto. That is a big plus. Your neuro could be reluctant to prescribe medication for several reasons. People often become immune to the benefits of drugs, they then stop working, and need higher and higher doses as the years go on, right up until they are at the maximum dose allowed, then they are in a right mess. Also theres all the horrible side effects, for which you then need to take more medicene to keep under control. Another possible point is that alot of MS patients completely change their diet, and find this much more beneficial than medicene. Ive heard many stories of people who get they whole health back., however it would take alot of stamina and patience, as it takes years for the full effect to kick in.
Im surrounded with a pharmacy of medicene in my bedroom, have pills popping out of my ears, just to keep me going and Im forever wanting the doses to be increased to mask pain or side effects. Going without them would be unthinkable, and Im now totally dependent on them. I often wonder if the pills themselves are causing me most pain… Its a catch 22. Yes, if possible, it is best to be without medication for as long as you can - especially if you are without pain.
Im surprised the Ms nurse said they cant help any one than the Neuro. Loads of people on this website seem to be forever praising their MS nurses, for the amount of support and advice they give. Maybe you should try another one at a different office/area, they are suppose to be wonderful. I wish I had one.
Well besides sending you a BIG BEAR HUG, I wish you well and hope you feel more relaxed this weekend.
With much love … Almond xxx