Primary progressive multiple sclerosis

Hi i just wanted to ask.,i have primary progressive multiple sclerosis. Ive lost most use of my right hand side. But just recently i have had a burning sensation all down this side. Its so intense it keeps me awake & t hen it goes on all day. I would really appreciate any help.

hi hun, you should ring your MS nurse really. It sounds like your body is reacting to something. sometimes i get burning in my leg and its usually down to a UTI, i always keep an eye on my urine with uranylis sticks.

are you on any meds, gabapentin is used a lot for burning. I believe.

Sounds like inflammation action. i would ring your primary care or MS nurse to be honest. xx

Hi crazy chick. thank you for your kind reply. The only meds im taking Is baclofen 3times a day. Ive checked & it dosent seem to be a uti. I will try & get hold of my m.s nurse.Sounds like your probably right.

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Hi, I have spms and I too have the burning all the time, or it can switch to a deep cold feeling, I used to take Gabepentin for it, it worked for a good few years, but last October after 13yrs I came off it as it wasn’t having the desired effect anymore, I tried pregabalin, but it wasn’t for me, so now I take nothing, I use cold pads, or cloth at night, they help to help me to sleep, I’ve had this kind of nerve pain for years. What I would like to know is…how do they decide who is SP and who PP, as my ms has gradually got worse, I never have a good period, use a wheelchair/scooter, walker around the bungalow, so how do heuro’s decide who’s got what ? x x

Morning GH, well good question i wonder about how they diagnosis MS period sometimes.

OK i started lets say 2006, (I went blind in 2000 neuro said it was probably ON WHICH can be a first sign somethinig is up MS).

2006 september, i loved car boots and lately had noticed i was struggling to walk round them my mobility was a bit off. but nothing to feel concerned with, but 11th september 2006 a monday i believe i had gone to car boot over the weekend, and sunday i could barely walk so my husband took me home. on the monday i could not get out of bed properly my legs were so stiff, and crampy. the doctor came out and said i had sommething nueuo going on that was my journey and over time symptoms slid down into slow progression. finally 2016 was diagnosed with progressive MS.

I hope i get this right. RRMS you get remissions, phases of well, etc sometimes lasting some time. you can check it out on society it explains it way better then me lol. then if you slowly stop having remissions and go into longer phases i believe this is a change to SPMS but not sure it happens to everyone.

PPMS and SPMS are not the same. yes MS but different. PPMS is a stand alone. i had lesions in spine, and ON, i believe RRMS is more brain to start. again i may have it all wrong. but there is a difference in presentation. x

Hi Crazy chick, thanks for that, I think my journey was a bit longer, although the attck that got me diagnosed came on pretty quick. I was first diagnosed with irirtis in 1990, aged just 30, with this I lost sight in 1 eye, went to optician, sent straight to hospital, given eye patch, drops and steriod cream, told if I got pain, or sight lose again to go straight to A&E, for so many years after that I suffered and still do with eye pain, but never went back, because quite honestly I’d have been there every month. Over the years other things started to happen, I was always falling a sleep, my husbadn kept saying, whats wrong with you, you’re always tired, we went on holiday to Greece where we hired a bicyle, I could ride it, my balance had gone, there were other things too, but I just got on with my life and never got anything checked out…until August 2006, when I attend a wedding, eye pain was really bad that day and to cut a long story short that we when I finally went to see my GP, when all the right side of my body went numb, diagnosed 6mths later with MS, 18mths later after being observed for that time, SPMS, now I do wonder if all the years in between if I’d have gone back, would I have been diagnosed with RRMS, that’s the BIG ? Now I use a wheelchair/scooter when out, walk with a walker around our bungalow, suffer with a host of symptoms, pain and fatigue being right at the top. So that’s part of my story, thank you for reading…if you have. Take care all and I really manda1966 that you get some answers, x x

You are right CC. PPMS is now being regarded as a stand alone disease. Under the umbrella of course of MS. Only about 10% of people are diagnosed with it. About 85% are diagnosed with RRMS. For some this will eventually morfe into SPMS. But we stand alone. There are no treatments world wide for PPMS presently but research continues. Anne.

It’s damned depressing to see PPMS symptoms written down I always think we are F**d but still we persist and manage somehow.

Take care, be safe M x



these categories are flawed!

How many people dx’d with ppms if they think about it can recall episodes of what with the benefit of hindsight were probably the start of their m.s. e.g. periods of extreme fatigue, periods of clumsiness, visual problems. Becasue if these episodes were m.s. related you haven’t got ppms.

We may well have bits of us which are going steadily downhill but other bits get worse and then better - we may have a left leg which is rapidly giving up the ghost but the right leg has periods of weakness and then recovers.

We all know the score re. m.s. but is it really helpful when the medics are telling us we are not going to improve - how do they know?

Of course we may not be running marathons but the medics should not deny us a bit of optimism.

And the whole terminology - ‘Multiple Sclerosis’ is bad enough but to add ‘progressive’ and ‘secondary’ gives the impression that we’ll be six feet under before the end of the week!

We have to make the best of a bad job - we mustn’t focus too much on these labels and take what then neuros tell us with a pinch of salt!


i stand and clap and applaud you cracowian i agree 100%

my neurologist said i can finally tell you with certainty after the last VEP test you have progressive MS. not primary but PROGRESSIVE.

I just assumed he meant MS which has now progressed, there is nothing for you see you again soon hopefully…

so i went home and as you do for the first time really googled progressive MS, and kept coming back to PPMS, which is a beast on its own, can be SLOW to progress which gave me a lot of hope.

However i am not convinced. I remember in 2000 going blind, then having a host of odd things going on dropping things constantly walking like i was drunk, falling asleep at work lol, so may things, then 2004 i collapsed the fatigue was horrific i could barely get off the settee, told it was uti and it would not clear up i was off work six months it took ages to get back to work. 2 more years of poop things, falling, list is endless.

then 2006 i couldnt get out of bed and the rest is history. from 2006 i never have had a day without symptoms. so ok what was it way back in 2000?

but yes i agree with you. I am just neurologically challenged i dont have MS. whats in a label really. just cos a label says i am a size 14 doesnt mean the article of clothing was actually made to the correct measurements.


My MS nurse told me SP is classed as progressive MS, although you’re not PP, you MS still progresses, only yesterday with a telephone appt she reaffirmed this, is calling for another MRI scan for me because I’m presenting a new sympton, left leg going totally numb now like the right 1, also all my other symptoms are worse and I haven’t got an infection, I ask her again if this was normal for someone with SP…her answer, YES, I’m probably progressing off old lesions and with the time I’ve had it, which is 14yrs. So all this for us is a challenge, just getting your head around what is going on, but like a lot on here I just get up every day and get on with it, because there’s bugger all else we can do, x x

has anyone I wonder ever really assessed the psychological impact of these ‘labels’ on those of us with m.s. and our families?

Why on earth are the terms ‘secondary progressive’ used. If for example your left leg has gone awol why not say ‘it is very unlikely your leg will ever improve’ - that keeps a glimmer that things may get better. Nothing wrong with a bit of optimism.

Of course we’re not stupid and we well know the score but don’t take all hope/ability to fight away.

The problem is the neuros have painted themselves into a corner with rrms/spms/ppms.

Bits of me are going downhill with no improvements - bits are o.k then not so o.k. and bits of me are unaffected.

None of us are one complete entity to be parcelled up and labelled.

As Winston Churchill said have to KBO - Keep Buggering On.

Sure I have heard that recently there is a new drug for primary progressive MS Ocrevus…It must have something about in the MS site.There is a criteria to mee to be commenced on this drug…Good luck researching it.