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PPMS question...

I’m un dx’d but seen in my notes possible MS and I think my neuro is thinking PPMS.

My question is do you ppmsers have good days and bad days and do you have symptoms that go away?

My symptoms, of which i have many, are there pretty much all the time, but for example, one day my arms will be quite painful, heavy and weak, but the next day they feel fine, only be weak again a few days later…

or I had pins & needles in my fingers for about 2 years but now thats gone altogether…

or my calves will feel very tight other days they wont…

or I’ve got a patch behind my shoulder that tingles and itches and drives me mad, but day to day or hour to hour even, the intensity of the tingles/itches vary greatly…

you get the picture?

One thing that never changes is my distance I can walk, no matter how I am feeling that day or which symtoms I have. After about 10 mins my legs become much weaker and i begin to struggle.

My legs have been getting progressivly worse over the last few years ( had symtoms for 4 and a half years) and their ‘jumpiness’ have become a lot more violent.

So I am curious to know from those with ppms how your symtoms affect you? do you have a set of symtoms that stay all the time (and progressively getting worse?) or do they wax and wain (obvioulsy not in the same way as RRMS)

Julie x

Julie I am the same as you, my symptoms wax and wane! I have probable MS and the Neuro thinks I too have ppms. My legs are also my worse thing and I have had to give in to a stick to walk outside or in shops etc. I have various other symptoms including pain in my legs, terrible balance,dizziness,twitchy legs et al. Some symptoms have disappeared but they make a return I don’t know, Hth Tree65

Thank you for your replies.

I’m 41 so started symptoms at the age of 37 ish, and my legs are probably my main symtom. Apparently I have spastic paraparesis in my legs. My story certainly fits in with ppms! Just waiting now for my results… again… I hope somthing shows up this time (especially as i am in so much pain right now from the LP)

x

Hi Jule, yeah, varies and changes by the day… and actually by the hour. Have good days and bad days, but never ever symptom free. I think this is normal in PPMS. Also can get periods of ‘flare up’ which will put me in bed for a few days.

Everyday is different.

Someone on here calls MS ‘Master of Surprises’ and the name certainly fits the bill…

Pat x

Hi Julie,

Your description is very close to mine in terms of symptoms. I have been having symptoms for about 7 years now and am diagnosed ppms about a year and a half. Dx for me was easy and quick because of lp results and both brain and spinal lesions on MRI. Of the approx 30 symptoms associated with ms, I have or have had 24 so far and yes sometimes they can go away for a few weeks only to return with more intensity. The buzzing and the pain is on and off usually weeks on with a few days off and since spring I only walk inside my house and have a wheelchair for outside. Unusually, for me ms went to left leg first and then left arm rather than right leg as seems to be a more common occurrence. The good days this year are the bad days I had last year. I hate the pain but I do find that when in pain I don’t descend into foggy bottom and generally have more balance and am better at cognitive exercises. On other days I have no pain but can’t remember words, how to do things and conversations that I’ve already had and of course let’s not forget the fatigue which is overwhelming most days. I know getting diagnosed is a long road for most people and it is cold comfort to know that when you get a dx of ppms the neuro will be very kind to you and basically send you home because he really can’t do much to help but it is better to know your enemy as soon as possible. The shoulder you mentioned is not tingling but pain for me that can last two to three weeks without a break and itchiness is my neck, palms, legs and arms. Tingling and buzzing for me is everywhere like you’ve been plugged into low voltage elctricity. I imagine you can recognize a lot of symptoms from my message and we tend to understand long before confirmed by doctors. Remember that ppms is a very individualistc and complicated disease and your journey is going to be very personal. Welcome to the club that nobody wants to join and good luck getting things clarified. I know they need to be sure but doctors need to understand how hard it is to be left unsure for long periods

All the best

Lucy

Hi Julie,

I was dx last month and my walking is the worst symptom. I am only able to walk a few yards at the moment and only with my sticks.

I have had numb legs since 2007 which was from the knees down and mainly my feet.

Since early this year my walking has got worse and my numbness has increased so it now starts at my middle.

I do not have any spinal lesions, only head.

My left arm has just started getting numb in the last month or so. I would say that once I get a problem it does not go away but gets worse over time and I have had no remmission in symptoms.

All The Best

Tony

Hi Billy,

In answer to your question, I gave up driving two years ago because of inability to focus on the road and judge distances. I get serious vertigo and dizzy spells and what appears from outside as small seizures which ends up with me suddenly on the floor, blacked out for seconds and so it seemed pretty obvious that I was a danger behind the wheel. So I voluntarily gave up my drivers license before I killed someone. Still hurts though. The horrrible thing about ms is that nobody makes these decisions for you and I constantly have to revise my life for e.g.not hanging out washing,not taking the dog out, whether I should use a wheelchair when out or my stick , getting airport assistance on flights. I hate all these things but now realise that they are necessary. The giving up driving is just another one.

Ciao

Lucy

Hey Lucy I agree with you - it seems that slowly but surely all the things I used to do and took for granted I am no longer able to! My family are all going in to town shopping and I just know that I won’t be able to walk the required distance and my husband is going to have to choose some trainers for my six-year-old! God knows what they’ll be like! Anyway the truth is that I’m really fed up as I’m not able to do what I want to and no one (except you guys on here) seems to understand, I think my husband feels that I ought not to complain and just get on with my life. That’s easier said than done! Tree65 xx

hi iam just on here reading everyones symptoms at this moment in time its limbo land for me its been like this now for 2 years

i dont walk very well allways got pain in back and legs and neck numbness in hands and feet i all so get altered skin sensation have no grip in my hands been told i have optic neuritis every test i have had has signs

of MS

my mri scan shows lesions which are not typical of ms now for the good part my doctor who has been great thinks its ms

my occupational therapist who is all so a ms nurse thinks its ms 100% the ophthalmologist i see all so says its ms and has said in letters to the neurologist i was in hosptial for 5 weeks having tests but thay did not do a lumber punch and a few other tests so my doctor was not very happy with them and belive me she let them no so now the neurologist is saying he thinks its all in my head YES HE IS SAYING IAM MAD after all the tests and what people have said to him

now i dont sleep ( i am posting this at 2. 30 in the morning )

and asking myself am i mad iam very down at this time in my life so were do i go now

iam very sorry if i should have not posted this on this page thinkyou for your time

my name is billy 47 years old

could you please tell me if any of you still drive on your better days

sorry about the spelling iam not very clever putting pen to paper

thanks billy

hi lucy & tree65

thanks for getting back to me its good to talk to people on here and read what thay are going though.

it some how tells me what i have coming. its all ways best to no the truth

thanks for your help i will keep on reading you guys on here.

thanks billy

( BE HAPPY )

Nope, every day is a bad day with PPMS, though if I could get rid of the pain in my legs I would feel 90% cured!

Hi, what a lot of interesting and varied lot of replies you`ve received.

I have a 95% of PPMS. Got that in 2003. but believe I`ve had it for 14 years.

I lost my mobility totally and have beena full time wheelie person for 7 years.

Good days, bad days? Yes, they do vary, but the symptoms are always with me.

My mind set and mental attitude to things can vary. Think I would ve been worse off mentally, if my hubby wasnt quite so tough emotionally with me.

He doesnt do emotion. Never asks how I am feeling, but cant do with me crying or saying life is hard. Tells me we have to cope with whatever we`ve got.

He has RA and fights thru his pain to help me.

luv POllx

Hi i have PPMS, I’ve been diagnosed for 15 years. I walk for short distances with crutches and use a scooter outside. I still drive my car but I use hand controls. they are a Godsend and give me some independence. My husband is happy cos I can drive when we go out and he can have a drink !!!

Lynne xx

Hi Julie,

Most of my symptoms are the same from day to day except for fatigue, which varies enormously depending on how much I’ve overdone things. Fatigue in turn influences how strong my walking is or how far I can propel myself in a (manual) wheelchair. Some days I can propel myself for a mile or more, other days not even a few yards, so there’s quite a variation. Like you I have infuriating itching behind my shoulder, which is worst just after taking my clothes off, but doesn’t vary much from day to day. Leg twitching and spasms too vary very little from day to day. The important thing is not to get too exhausted - if I can stay well rested, then every day is more or less the same as far as symptoms go.

All the best,

Chris