PPMS Symptoms

Hi everybody. I was wanted to ask if symptoms such as numbness, pins and needles and optic neuritis are less common in PPMS and more common in RRMS? Also is leg spasticity more common in PPMS and less so in RRMS?

I am still without a dx and it is friving me mad!

Moyna x

Hi Moyna, I know hun, limboland drives us nuts.

I cant answer your questions as I dont have PPMS, as you already know.

But I would imagine all types have MS have a variation on spasms, spasticity etc.

I expect someone else will come along soon and help you with the answers.

I`ll watch out for their replies to you.

Snowleopard is never far away, usually on this board.

luv Pollx

Hi Moyna, Sensory symptoms like pins and needles, tingling and ON etc are more common in RRMS as RRMSers tend to have brain lesions. People diagnosed with PPMS tend to have more lesions on the spine and therefore suffer more with their legs, bladder and bowel. These are my worst symptoms, however I do suffer with some pins and needles, jerking etc. I have never had any eye problems even though my VEP showed a delayed signal connecting my brain and eyes. I hope they stay the same. Therefore, there is definitely a crossover between the two types of MS but there are distinct differences between the two! Hth, Teresa xx

Hi Moyna,

Nov 06 I went to gp with sinus type pain, strange vision patterns and recommended I get my eyes tested, so I did on Saturday afternoon. The optician spent ages looking at my left eye and called the hospital right away so they could see my eye. To cut a long story short, I was dx with optic nueritis and after 14 months of tests I was dx with ms. Only later I was told it was ppms. Things were fine until Jan 11 when I developed a limp comming from my left leg and all minor symtoms are on my LEFT side. I use a fes foot lifter a lot of the time, get cramps in small toes, above the ankle, fidgity leg syndrom, get spasms in fingers when I wake up, fingers are week and 50% useless. Both legs are week and if I get a strain in my arms or legs it takes months to heal. Plus the usual slight balance probs, forgetfulness and general "can’t be botherd " feelings.

I’m starting a university on-line physiotherapy programme of exercises designed for my symptoms which takes about an hour and to be done at least twice a week.

Chin up, John

Hi Moyna, it does sort of vary a bit between PPMSers just like RRMSers… although I would say that fewer of us seem to get ON… but some of us do so doesn’t really mean anything.

I get pins and needles, numbness, reduced sensation (so not quite numb but not full feeling), spasms… oh God I can’t list all symptoms… it goes on… and on… and on…

Mainly the difference is that we tend to have symptoms all of the time (although they still vary day to day) so there are no obvious relapses.

I would also say that I feel like I’ve had flu for about 7 years or so. Never ever get a day where I feel completely ok and the fatigue is pretty unrelenting.

It’s awful being in limbo! Concentrate on getting a dx first. It sometimes takes ages for them to say if it’s PPMS.

Hope you get some answers soon,

Pat x

Thanx everyone. My only symptom is leg spasticity although when this was all triggered by a sort of attack in November 2008. I did have numbness l’hermittes etc then which went after a few weeks. Nearly a year after that I started to notice spasticity which has got progressively worse. I am having another MRI next month (3rd in 2 years!) to see if that shows any more info.

Moyna x

Hi Moyna

Pat’s right; PPMS stuff just does not go away. I’ve been having leg spasms for the past 6 years, making sleep particularly difficult, although baclofen does help. It doesn’t go away mind; just makes it easier for me to sleep.

Anecdotally, every person I’ve ever met who ‘knows someone with MS’ has regaled me with tales about how they kept ‘losing their vision’ and ‘having attacks which meant they couldn’t walk’ or ‘struggled to speak and remember things’…usually prefixed by the word ‘she’…!

In short, the 90% of MS folk who have RRMS that tend, mostly, to be women aged 20-35 and, therefore, the sort of people known socially to the school mums and dads that I talk to. Sorry if this comes across as sarcy or dismissive, but as a sporty rough’n’ready bloke in his early 40s who has never experienced any of these syptoms yet has not been able to walk “properly” (i.e; not bed bound after an “attack”) for the past 6 years I have grown increasingly irritated by the public seeming to equate MS with RRMS. To state chalk&cheese might seem a bit harsh, but it often feels that way.

Us 10%ers need to stick together. Chin up about your diagnosis. Try baclofen: it really is a godsend to me.

The information leaflet from the MS society about PPMS is very interesting and explains the differences between RRMS and PPMS. You can order them from the MS society they have these leaflets for everything you want to know about MS.

Lynne xx

I was diagnosed with PPMS on my 40th Birthday… and life begins at 40 so they say !

Hang On !!! The above post was meant to be on another thread… whats going on ? Anyway: I have PPMS and have bad spasums in my legs, especially after food or when im sat down or trying to sleep in bed. Apart from my bad balance and dizziness I dont really sufer with my eyes. OK i have a few days when there are black floaties swimming around but nothing to really impare my vision. About 3 times a year i get zig zag lines in my vision which a neurologist put down to migraine (they first started at the age of 14), now i know it wasnt migraine, but MS. Si i supose you could say i was suffering from very slight MS symptoms at the age of 14 … now im 42 and was only diagnosed 2 years ago. I also have numbness especially when i sleep… you know, like when you lie on your arm for ages and wake up with it totally numb. I have to keep moving in my sleep :frowning: But i find a few beers & a couple of cigies soon sorts that out.