Need a bit of advice if possible
ive been having symptoms since December, lhermittes then hand tingling feet burning and no tight heavy legs after walking 200m or so. Can anyone tell me if ppms would present like this or if the speed of it all is RRMS more likely?
also if it is ppms has anyone had it plateau and not progress after an initial fast progression?
Hello Kris.
The symptoms you describe a familiar to me but not as part of the initial deterioration. For me it was more gradual. Frustratingly it’s impossible for anyone to make an accurate prognosis as we’re all affected differently.
The best advice I can offer is to go to your GP and ask directly. If you keep some form of record of distance walked or other activities which aggravate the symptoms it could reinforce your own evaluations. On the other hand, such symptoms, though similar to some affectations of PPMS may be the result of something else.
Best wishes, Steve.
Hi Steve
thabkyou for the answer it’s really appreciated
i understand at the moment all the symptoms look a little fast to come on which is what is concerning me, I am trying not to panic about the speed so far. Today I have had the slightly stiff legs but managed to walk for a couple of miles so it’s strange that it’s coming and going, is that normal?
I read on your other post that you have had a clear MRI in february. If it is MS and your MRI is clear then I suspect it is the start of RRMS and not PPMS. In PPMS my neuro told me than the lesions are quite old and neurodegeneration happens under them. There is a theory that PPMS is really SPMS but the person has not noticed the RRMS phase.
In PPMS the lesions are not enhanced which means they are not new - ie happened in the pa st. Also in progressive MS there are no new attacks and therefore no new lesions. Disability progression is due to neurodegeneration under the old lesion.
I read somewhere that people have been seen at autopsy to have loads of MS like lesions but had no symptoms. These people obviously had benign MS and were also lucky not to have gone progressive.
Moyna xxx
Hi thanks moyna
the initial mri of brain and spine was clear yes which I took to be a good thing until I read some with ppms have less lesions in brain, but that’s thw worrier in me. My neuro exam last night was normal apart from slightly brisk/normal reflexes but apparently nothing to write up about, I’ve got another mri soon so I’ll see what that says, I’m concerned by how quick it has all come on.
its odd as it doesn’t seem to look like RRMS or PPMS based on how it’s presented, it’s both legs, both arms but tingling in left hand and foot, it’s a bit odd so far, I’m hoping it’s something systemic etc
Hi Kris
Many moons a go mine started with a numb patch on one leg, but for me progression has been a slow gradual decline over many years, but no two people seem to be the same, which is what makes it so difficult to diagnose.
The neuro did tell Mme that for lots after 15 years it can plateau, sadly not in my case. He also said a cure was just around the corner, that was back in the 80’s!!
Wishing you all the best.
Pam x
Hi Pam
thabkyou for the info, I always read that ppms was a lot slower but I’ve also read of some cases where the decline has been very quick which is why I’m concerned currently. The speed of this so far is not good I gather
Hi again have you had your B12 checked. symptoms of B12 deficiency tends to be symmetrical.
Moyna x
Hi moyna
i had them checked and they were 350 but this was after weeks of supplementing with a large dose of b12 so not sure if that skewed it at all? I’ve not taken any since
the only other thing notes was possible chiari malformation by the original radiologist but the neuro and write up radiologist dismissed it