ks. A bit of background for anyone who doesn’t know me… I was dxd May last year with rrms, out of the blue. Three instances of paralysis in three days. Ambulance to a&e Saturday, admitted to ward, hundreds of tests including mri. Monday dxd ms. A speedy journey indeed!
I recovered well. Dmd prescribed, but another relapse in September did the damage. I came out of hospital with a crutch. By March I was using a chair for any real distance and mobility deteriorating all the while. Saw Neuro today and we were back in agreement, it’s ppms.
She felt this was the case when I presented to her, aged 55, last year. She’s agreeing to let me continue with dmd, at my request, just in case… I’ll see her again in October and will have another mri in December. Even though I suspected this confirmed diagnosis today, I’m still a bit stunned. And a bit down. Scared too.
Am I going to be confined to a chair and suffer bladder/bowel problems by xmas?! Will I have to stop driving? Lose another bit of independence? I’ve really only just got used to “having ms”, now this seems bigger, worse…? Sorry guys if I sound ott. I’m just looking for reassurance I suppose and be glad to hear your thoughts and experiences. Thanks for reading if you’ve got this far.
Flippin’ eck chuck…that’s a lot to take in over a short space of time!
Bad news first…sadly ppms can happen and progress quickly like that. And the only decent drugs are to help with the symptoms. But I believe there are now drugs in trials to slow down the rate of disability.
Good news next
Life with ppms, although difficult, a good life is still possible. Needing a wheelchair now may not mean it is permanent. If foot drop is causing falls, ha e you heard about FES? It is a system to keep you mobile. There are other such gadgets too. Speak to a physiotherapist about these.
To keep as well as possible, take rest periods, eat healthy foods and accept help whenever it is offered.
Thanks for the reply Pol. No it’s not foot drop really that’s the problem. The flippin thing just won’t behave! After a short time of hobbling, my leg seems to slow down by itself. My hip has to make a concentrated effort to move my leg. Sometimes my leg totally refuses to budge. Walked across garden to neighbor last week for a coffee and change of scenery. Didn’t need the crutch, it’s only next door. Hmm. Got half way across on the way back and got stuck. Couldn’t bring right leg forward at all. Thankfully hubby was by the window and came to my rescue. He bore all my weight to get me back indoors. Oh that tears and tantrums then!
I’m sorry you’ve had this hit you so hard and so quickly
Actually though, sometimes FES can help in your circumstance (or so I’m informed and am hoping myself). It’s possible to stimulate the nerve at the hip with an FES unit. Either in combination with foot drop or just on its own.
In my case, I have foot-drop and am using an FES to correct that for the very limited amount of walking I do in the house (literally a few feet a few times a day). However, my entire right leg refuses to do anything like what it’s being asked, the hip doesn’t do the right thing at all and the knee refuses to lift as well. So lifting the toes with the FES unit doesn’t make it easy to walk at all. I almost permanently now have terrible pain in my right hip because I’m trying to make it do something it’s just not able to do.
So I’m going back to Odstock to get them to try out a dual unit. There will be two pairs of electrodes, one pair will stimulate the nerve which controls the movement of the hip whilst the other pair sit below the knee to tell the toes to pick up. At least that’s what I’m hoping.
I’ll be expecting that my lovely OH will be able to learn where to place the electrodes on my butt since I can’t see it!
So maybe you could investigate the FES situation where you are.
That weekend you described must have been traumatic.
I also have PPMS which was finally diagnosed in 2014, at the age of 61. My symptoms have worsened slowly and I can still walk short distances, using either a rollator or a stick, when I am at my best.
I understand how you feel but, as Boudica states, there are ways to improve your lot. I would recommend having your house assessed by your NHS OT service so that rails can be added, toilet seats raised, beds raised etc. I know services vary but I had all the above provided for free, for which I am permanently grateful. I found the NHS Physio service very supportive and I have a suite of daily exercises to perform. I would also recommend seeing your NHS Continence nurse; I was given some useful advice and she prescribed a drug to help with my urge incontinence.
I find my mobility scooter invaluable as it enables me to have energy available for short distance walking the other end. The other big investment we made was the purchase of vehicle with a ramp. We bought a Peugeot Partner Tepee, which is brilliant and easy to get in and out of. I gave up driving last year when I could no longer trust my legs to obey orders from on high. Scooters and wheelchair accessible cars are VAT free!
It has taken me a while to accept having MS and to abandon the foolish pride which accompanied my denial. Since then life has improved, and I accept my limitations. It is a trade off; I concentrate more on the things I can do and try not to dwell on those I can’t do any more.
If I have painted a rosy picture, I apologise, as this is palpably untrue. However, I am delusionally optimistic and I try to remain positive. I keep my mind active with reading and going to the theatre and concerts. Fill your head with stuff and don’t dwell, is what I advise, but be realistic.
Don’t forget to apply for your PIP.
I hope you find a way through this and, as Boudica says, take what help comes your way. I found that to be a long learning curve.
Alun, what a lovely post! Thank you. :-)Hubby sseems to have a better grip on all this than I have. He’s already talking rails and I found myself being shown a teepee on the forecourt today by him. As he pointed out all the advantages I had to tedll him, (crossly) that he didn’t have to sell me the bloody thing! Things work a bit different here. In order to get motability vehicle allowance you must first apply for a Primary Care certificat. I have sent off the form and met with the first assessor. In turn she puts her report before a board. To be honest, you’d need to be just a torso, to be granted this!!!
We don’t have much of an income but our outgoings are few, thankfully. We have taken out a small loan and have some savings, to get another vehicle. My Honda civic can’t take my wheelchair and his rollater, and logistics are ridiculous. He has fibromyalgia for the past 10 years. He’s now my registered carer. I have about 18months left on my work contract, then it’s bye bye. I’m fortunate to work from home and flexible hours.
Trying to sort the house and huge garden for long-term ease now.
I knew you were in the RoI which is why I don’t know what is and what isn’t available to you. Knowing that you can get lovely sporty wheelchairs provided to you, it may be that you can also have your pick of FES systems. There are a few on the market. Perhaps best to discuss with a physiotherapist. But I do think applying electrodes to ones own hip/arse/behind in the right place to stimulate the correct nerve is beyond me and perhaps many of us.
Thank you for your kind words. I am sorry to hear that your husband also suffers.
I had not realised that you are lucky enough to live in Eire. We spent a lovely holiday in County Kerry, near Kenmare, many years ago and still think of it.
A lot of what I wrote is irrelevant but I am sure Eire must have a system comparable and probably better than the UK. Services here are somewhat haphazard and vary from county to county, and nation to nation. Sativex is available in Wales on the NHS but not in England?? Where I live the NHS bends over backwards to offer practical help for free, but not so in other areas.
We also have a Conservative government keen to penalise the disabled in order to reduce the deficit, although some of their most recent attempts have been put on hold, whilst negotiating favourable tax breaks to the multinationals. Caring, compassionate Conservatism, my eye.
The garden is a wonderful place to escape from these realities and I savour being in ours, the creative work of my dear wife. We try to attract as much wildlife as possible. Do you have a wildflower meadow, as you seem to have a large garden?
I think,( well I know we did) we crossed paths in here before. Probably talking wheels. My garden is about an acre! It’s been my dream to live in the country with a lot of space around me, and live as stress free life as is possible. I was born here but left as a wayward teenager in the late seventies. Lived in the UK for 28 years and returned home 10 years ago. Having worked so hard all our lives, we finally were/are living the life we sought to achieve, sort of. Here 6 months and himself dxd fibro, las year my ms. Things could be worse. I can’t fault the care and attention I’ve received in a health system stretched to the absolute limits.
This brings me to another questioni. I’m beginning to feel a little guilty about continuing with my dmd. We all know they are an expensive treatment. Is anyone else with ppms still on some dmd?
Husband thinks I should give some serious thought to my continuing taking Tecfidera, now my diagnosis has been altered to ppms. Knowing all literature states it will not serve any purpose. I’m sitting here now, totally unsure of what to do.
My perscription costs thousands per annum, plus the three monthly blood work. I feel I really must contact my Neuro again and decline the new script she handed me yesterday. It is a very expensive “insurance policy” for my psychological boost.
You mentioned in your first post that you “had another relapse”, so a bit confused how it can be PPMS and there might be more suitable treatment available for borderline SPMS.
I’m only going by what the Neuro said. I began Plegridy injections July last year, a month after initial diagnosis.of rrms. When I relapsed 11 weeks later, in September, i queried the point of taking this drug. I was told it hadn’t been in my system long enough to be effective. I began Tecfidera in March this year as the side affects of plegridy (major depressive episodes) was more than I was prepared to endure, particularly if I was still going to relapse anyway! Thanks for the link. Interesting reading.
Did the relapse you had whilst on Plegridy show signs of even partial remission? If so, then you can’t have PPMS, although at a push it could be SP with relapses.
I saw my neurologist last week and was talking to him about RR becoming SP. He said “you have MS, it doesn’t matter what label you give it, it will do whatever it likes!”
So with that in mind, regardless of what your official diagnosis is, if your relapse showed some remission, and you are relatively side effect free, plus your doctors are still happy to continue your prescription, I would suggest you carry on with the Tecfidera. Bugger the cost of it, if there’s any chance you may still have relapses, then being on a DMD is best.
No Sue, that relapse in September on plegridy did the damage. My mobility is rubbish now, and getting worse. I kept wondering when I was ever going to have remission! My first mri brain which lead to my dx last May showed two lesions. A previous mri spine, taken for orthopedic reasons, was looked at and showed “significant irregularities”.
The second mri in January showed no changes.
I have to say I agree with your Neuro, it’s ms, whatever title you want to give it and it’s not going to go away. I’m staying with Tec unless bloods, over time, indicate otherwise.
Ah, knickers to that theory then. But as you (and my neuro) both seem to agree, stick with the 'Tec for as long as it is prescribed and as long as your blood tests remain good.
Very confused now, despite reading up on it all. :-/
Is it possible to go from rrms to ppms or have I been misdiagnosed from the start? For what reason has my Neuro said it’s ppms and not spms? Can anyone shed any light on it at all. Thanks, from a very confused Poppy. :-/
I’ll see her again in October and will have another mri in December. Even though I suspected this confirmed diagnosis today, I’m still a bit stunned. And a bit down. Scared too.