Just read somewhere on this site that somebody said there isn’t any treatment for primary progressive MS
I am 65 and having investigation and await results but its possible it could be primary progressive MS as late age wise to get this I think by what I have read on internet.
The thought of no treatment fills me with horror.I am aware no cure but surely symptom control is offered if available.I have horrible hand cramps of varying intervals most days and arm pains as well as mobility problems from foot drop which came on over 6 months ago.
I have had one lot of nerve conduction tests which showed chronic denervation in legs and await a repeat of that next week.Also asked now for arms to have nerve conduction tests.
Awaiting brain scan result but MRI of full spine showed no lesions (I understand you can have them in brain only)
Just had MRI spine redone as initially told by a consultant foot drop is in my case case due to nerve compression in L4 and L5.Then the neurosurgeon said MRI didn’t show root compression so ruled out nerve decompression surgery.!!
Its a minefield and of course like many other people apointments get cancelled due to Covid.I got desperate so paid for 2nd lot of nerve compression tests and 2nd MRI to speed it up a bit. 4 months ago I was working for days a week and now I can feel the physical decline.
I am so glad to have a husband, family and friends who support me along with a strong faith (thats being put to the test lately too!)Heaven know how people cope awaiting investigations and diagnosis who live alone and maybe have horrible symptoms to cope with. I try and count my blessings but we are human and there are days I feel like taking to my bed…But I dont.
Would love to know if other people with a later in life diagnosis were offered any symptom control and if it helped.
I have researched the local MS support group and exercise classes as well as how to contact the MS nurse(well may as well get prepared)
Its really been helpful to come to this site…How great that people share their experiences as you dont feel so alone with it.Thankyou.
I am 63 and was diagnosed with PPMS in 2006 aged 49. I’d had symptoms for several years, my GP had adopted a wait and see if it goes away approach until I developed dropped foot and walking problems. However I won’t bore you with all of that.
To answer your question when I received my diagnosis I was told rather bluntly by the neurologist, there is no cure and no treatment. I felt like I’d been told to go home and wait for paralysis.
However there are treatments and medications available for some of the symptoms. Drugs for dealing with pain, muscle spasms, over active bladder for example.
i can no longer live independently but I’m fortunate that my husband has accepted the burden with good humour and without complaint. I’m also fortunate that I’m not in pain and feel well. I can’t walk, but can weight bear to transfer.
i had problems with my bladder, both over active and failing to empty fully. Meds didn’t work for me, and learning to intermittently self catheterise only partially solved the problem.
So now I have Botox injections in my bladder every six months which solves the frequency and urgency issues and I self catheterise several times a day to empty my bladder. It’s easy and not unpleasant or anything.
The only meds I’m on is Amitriptiline. It’s an anti depressant and is often prescribed for pain. I’m not sure why they put me on it, as I’m neither depressed or in pain, although it helps me sleep. I have never slept well.
i sometimes suffer muscle spasms but they’re annoying rather than anything else, and one neurologist told me I’m better off without muscle relaxants if I can manage.
Sorry I can’t put a more positive spin on this. I hope you stay well and safe. Feel free to PM me if you think I can help
I was diagnosed 2007 I’d had symptoms before but no idea what the hell was wrong, after MRI and lumber puncture test. I was told it was Primary Progressive MS, I was 51. Back then I was told there was no cure AND told to learn to grin and bare it. I was horrified, angry, frightened etc it’s a boring long story. I am 63 and get around with a 4 wheeled walker, I have dropped foot but it’s a positive attitude that will help you the most. Family/faith what ever it takes, what doesn’t kill us makes us stronger! M x
Your experience sounds similar to mine. I’ve exchanged a couple of PM’s with Maryc now. If you’d told my younger self that one day I’d be diagnosed with an incurable, untreatable, progressive illness, I would probably have said, “I will just go to pieces then!” But I didn’t, and probably like the majority of people I’ve got coping strategies. That’s not to say that I don’t still sometimes wonder what I did to deserve this though.
Hi there, I’m 51 and got diagnosed like you after MRI and lumbar puncture. How did you/the docs know you had PP instead of RR? I’m asking because my symptoms have been developing gradually over the last few years: loss of hand sensation and dexterity, increasing fatigue, and weakness, reduced walking ability and balance steadily worsening, awful depression and anxiety that I assumed was peri menopausal. I’m not convinced I’ve had any “attacks” though (just a period of bugs under my skin once which went away after 2 or 3 weeks).
Even so, the current working diagnosis is RR though I’m being studied to see if I’m progressive, which seems to make more sense to me. Active neck lesion in last scan plus lots in brain and some in spine.next MRI scans on Friday. If they decide I am primary progressive, I guess the Vumerity I’m on will prove pointless and they’ll switch me to Ocrevus. Then maybe nothing if I can’t tolerate that. As you’ve more experience at this, I’d be grateful to hear your story. (removed by moderator)… I live in Gran Canaria… And currently able to work part time from home. Best wishes Theresa
Hi Theresa
I too was 51 they went straight for PPMS, I’d had difficulty walking when we were away on holiday 2002. Legs gave way and I didn’t know why! I was not given any drugs for PP since there are none. Whenever I am thinking about PPMS I get angry and maybe a bit sad. I don’t want to be negative to you.
Walking/gait/balance are ‘shot’ but I will not give in to this hellish disease. So chin up and make the best of things there’s worse problems out there. Take care, be safe.
Ocrevus is licenced to treat PPMS now…have you tried it? Only works for a subset but at least there is something. Everyone progresses differently and I´m used to being severely limited in my mobility as had ME (CFS) all my life so it´s okay to be angry and sad with me. I´m angry and sad because I thought one chronic illness was enough to contend with! Hang in there and try to stay in the present moment. It makes life a bit less overwhelming. I break tasks down into tiny steps and talk to myself to try nd do one thing slowly…brain very woolly. Happy to corespond if you want to. Hugs, Theresa
I’ve have just started Kesimpta this month and from what I understand, Ocrevus is same drug except administered differently; intravenous vs subcutaneous.
I have RRMS and asked if it has now progressed to SPMS, as since relapse at beginning of year, the remission has hardly materialised; I feel mobility confined to few dozen steps from home maximum --Neurologist said it’s still too early to tell. Is use of wheelchair the pre-requisite?
Hello I have PPMS at 73 only just starting to be a problem, told no medication at the moment I am affective in both legs the neurologist tells me its like cross wires I always thought it affected two different places, it feels when I walk its on pebbles I get a lot of Brain fog and I need now and then to go and lay down for a bit, hope you are coping
Peter
I’m new here. Got diagnosed in 2012 with RRMS aged 34, following an MRI.
I had a MS Nurse when I was in York and for the last couple of years in Halifax.
Got to be honest first Neurologist in Halifax wasnt helpful and didnt know why I was seeing him. There is a new Neurologist in Halifax now who specialises in MS. He was gobsmacked I had a treatment plan since diagnosis. Just a couple of doses of steroids and various different drugs. My walking is really bad, get fatigued quickly and get brain fog occasionally. I had a brain and full spine MRI about 4 weeks ago. He thinks I’d be eligible for Ocrevus. I know there isnt a cure but anything to help slow things down would be good.
I get so down and frustrated sometimes but thankfully work are really good with me and it helps I work from home and I have a supportive partner.
It’s good to read these forums and see how people are dealing with things.
Hi i was told my MS was PPMS at 73 I don’t know of any help, I mainly suffer with my legs, it feels like I am walking on pebbles but just lately they get painful if I walk too far, I get a lot of brain fog also, sorry I am not much help
Peter
Ocrelizumab is licenced in UK for PPMS, provided you’re not NEIDA (no evident inflammatory disease activity). In USA and elsewhere, they prescribe according to symptoms only. I was regarded as NEIDA for 2+ years following diagnosis but latest MRI shows new lesions in brain and spine, so I’ve been approved for Ocrelizumab. I’m 61. Not sure if there is a cut-off for age but think it is not prescribed to new cases for EDSS 7.0 and above (wheelchair-bound).
Since PPMS has no relapsing-remitting component, the aim of the medication is solely to slow down the rate of progression and apparently 70% claim a slowing. So not a cure and not a halting of progression, it is a little subjective but supported somewhat by various tests.