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Does ppms act like this

Hi guys

no answer from my mri yet but wondered if I could get some info off you all

for 4 months I’ve had symtpoms add more and more almost weekly but I wanted to know if it acts like this

all my shmptoms almost flare up as in they come on quite quickly, there are a few like arm pain I have that has slowly increased in frequency but my feet burning came on overnight, lhermittes the same, leg cramps and stiffness went from nothing to big pain and then gone again to a lower pain

none of this matches the typical relapse and they all move around and change day to day, the other day I couldn’t walk far without pain then after that I have a little pain but can walk miles and jog around

I also wondered is it normal to have cramping pains on both legs and then achey painful throbbing in both arms? Only after 4 months! It is almost too much if that makes sense.

The arm pains stem from my trapezius area then go cold in bicep and hurt down the arm

sorry it’s so much I would love some help off you guys

H Kris

Even though it is called progressive you can have good and bad days with things turning up and then disappearing, last year i had the MS Hug, and haven’t had it since, you are in limbo land at the present , I presently have found if i worry tto much it doesn’t help with the symptoms and actually makes them worse , your aches could be down to thinking about your situations if i try and divert my thoughts away it helps , have you tried meditation tapes, works for me as the meds dont and there are so free on the apple podcast area

trish

Hi trish

its all confusing as I know ppms is usually a far more slowly slowly progression whereas what I’ve had has been very fast so far I guess. Also they say temporary improvements not remitting of sumptoms, i have had numb fingers and toes that have disappeared completely also Lhermittes

the things not to go have been spasticity and arm pain along with left hand and foot tingling

its the way the walking issues came on in both legs overnight too and now although they are there they seem a lot bwtter

Kris I find what you describe very normal with my PPMS. In fact one way that I know that something is MS related is that it comes on so suddenly and then goes very suddenly. Agony one day and nothing the next!

PPMS does fluctuate a lot… and walking can change by the day… or by the hour!

Have a good weekend. Wet and dreary in London.

Pat xx

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Hi pat

i was hoping it would be different lol

it all has come on so quickly I’m worried about the problems woth both arms already as I know that’s not great

I’m looking into hsct should it turn out to be ppms I know there’s not great odds but there’s a chance

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Hi Kris, from what I believe in general sensory symptoms can come and go in PPMS but footdrop comes on slowly and is permanent. I dont suffer any pain at all only when I force my spastic calf muscles to stretch. However if there is spasticity then this as a result of an upper motor neurone lesion and if it is PPMS the spasticity is there to stay. But not all tight muscles are actually spastic. Ankle clonus is usually a sign of spasticity and so are over excited reflexes at the knees. You said your neuro exams were normal so therefore your neuro does not think you have spasticity.

To be honest I dont think you have PPMS if you can jog and run around again after having had problems.

Moyna x

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Hi moyna

thats my thinking

it was literally so atiff that I couldn’t walk properly and then now I can walk fine did about 2-3 miles a day this week and I can jog if needed

it hurts on and off but nowhere near what it was, the arm thing is probably the worst issue right now

Hi Kris

I find my symptoms vary in severity from day to day, so even when things appear better say when I get up, that does not mean the afternoon will be good, it seems it raises its ugly head just to remind you.

I would think with you walking 2 _ 3 miles and jogging that must be a positive, hope so.

Pam x

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Hi Pam

yes it must be a good thing, especially as I was increasingly concerned the other week with how difficult it was to walk. My arm is now the big issue, both are achey heavy and painful but the right one feels useless almost. It’s intermittent but has come on over weeks, the pain is from neck through shoulder arm to hand

is this normal?

sorry for all the qs

Hi yeah

thabkyou for that and I appreciate what your saying

i think all they’re looking at right now is to rule out Ms and see if it’s chiari, the lhermittes has got them believing it’s a neuro thing

i get my results asap, I know the radiologist has reported it I’m now waitin for my neuro to report it to me

KrisP,

Anon gave a very good answer… try to enjoy what you have for now and celebrate the good days… I’m in limbo like you and i’m really trying to practice what i’m preaching here, its so hard some days i feel so frustrated and helpless and i’m desperately trying to rise above the anxiety of it all and its a daily battle not to end up with depression…i feel so trapped at times and the (not knowing) and the (what ifs) are awful …this forum is very good and it helps me a lot and also being able to chat to someone on the helpline… I rang last week and spoke to a lovely man … he didn’t have all the answers but he cared and was very reassuring and it just helped me to stop feeling i was going crazy… I suppose not being diagnosed i don’t truly belong here but this a brilliant forum and the nearest to understanding what i’m going through.

Take care Love Michelle x

Hi

thanks Michelle

its nice to hear from other people well not nice id rather we were talking about painting colours in b and q and not about this crap but what can you do

uour right though I’m trying to do everything I can now incase it does get worse and tryin not to think too much about it

thabks