Hi - I’ve been referred by the Neuro for more diagnostics next week - MRIs, after a clear neck and spine MRI last year.
question to ppms’ers please - how long after you noticed your first symptoms did you start to have trouble walking. Or, given the nature of ppms, was difficulty walking your first symptom?
thanks!
I don’t think there’s a simple answer to that one, it’s like the snowflake analogy, we all have our own individual and different version of MS.
My first fall prompted my diagnosis but hindsight says a lot more. I saw a chiropodist about 12 yrs before I was diagnosed due to my numb big toe but even before that I had a weird habit of kicking off my right flip flop - my right leg is most problematic. I’d also been seeing gastroenterology for about 3 yrs before about what looked ike Cronhs disease but eventually they agreed it was MS related. I’m actually suspicious there was an incident 19yrs beforehand too.
Good luck at your appointment
Sonia x
Hi Jimmy, I agree with Sonia, there just isn’t a ‘one size fits all’ with MS. And also like Sonia I started getting symptoms about 20 years before diagnosis…very mild and all put down to anxiety.
Calf of my leg feeling like wood, problems swallowing, dizzy spells, feeling like water trickling down my legs… and overriding everything was terrible fatigue. All put down to anxiety which I believed it was.
It was a bad case of shingles on my face and scalp that finally got me to a doctor’s as even after the shingles cleared up I could not get over the fatigue and couldn’t even work.
So got a diagnosis of ‘post viral fatigue’, then a dx of ME, then ME specialist sent me for brain scan…you can see where this is going!
Even so it still took 2 years to get dx of MS and another year for PPMS.
Actually difficulty walking didn’t start for a couple more years. Now I only really walk in my flat BUT we have some people on here who are still walking 30 years after dx! So it really is different for everyone.
Good luck with the appointment. Let us know how you get on.
Pat xx
Yes, Jimmy. Everyone is different. A couple of minor symptoms like numbness and spasms led me to the doctor’s eleven, seven and three years prior to diagnosis. But for me the biggest worry that sent me in 1993 was walking difficulties. But this is only because I used to be so active.
Perhaps I wouldn’t have noticed if I wasn’t going up and down the mountains of North Wales or was finding heavy feet after a game of squash or five-a-side.
I could still walk however. It was a gradual thing. It gave me time to prepare myself. But it wasn’t the end of my life. I am now active in other ways. As Pat said, it’s the fatigue which can really get us.
I wish you luck for your appointment.
Best wishes, Steve.
Thanks for the replies folks. Had clear MRIs 18 months back though I understand this is sometimes the case early on. Also had a normal motor evoked potential to the feet which I understand would be less likely at any stage of PP.
nonetheless, things have been with me fairly consistently over this time and the Neuro feels it’s time for another scan.
thanks again.
mine was eye sight first then minor stiffness now severe legs giving way and a gp who said i was fine for a year everyone is different.