PPMS question...

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

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 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

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

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 wasn`t quite so tough emotionally with me.

He doesn`t `do` emotion. Never asks how I am feeling, but can`t 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 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