how long have

Hi , Just wondeing how long you have ppms symptoms and did you find is it harder to get a diagnosis of this form of ms.

PS this bit for women who have ppms does anyone suffer at certain times of the month.


Have had PPMS symptoms for 5.5 years and been dx’d for 1. As I had had this for more than 4.5 when I saw the neuro it didn’t take that long. About 7 months. Haven’t noticed things worse at the time of the month. Teresa xx

I was diagnosed in 4 months but as I was able to tell of symptoms over the previous year there wasn’t really a problem. I had been blaming walking problems on 2 broken legs I had 10 years earlier!

No problems at the time of the month.

Sarah x

Hi, I started getting ‘stuff happening’ about 13 years ago… ignored things or made excuses (working too hard!).

Got shingles on my face and head in Jan 2006 and couldn’t get my strength back (I think I got them because I’d been pushing myself through fatigue). Was dx with ME later that year by ME specialist who sent me for brain MRI. ‘Bright spots’ were found.

Had LP in Feb 2008 and was told in April of that year that I had ‘mild progressive MS’. Later told it was ‘benign PPMS’!

Changed neuro who agreed there was no such thing as ‘benign PPMS’ Was told it was PPMS in 2009.

Was already post-menopause.

Been lucky so far. I would say it’s very slowly progressing.

Pat x


Diagnosed 11 years ago but can trace it back a further 15 years. Diagnosis of ms took a year from setting the ball rolling with investigation into loss of some movement in one leg, but another 2 or 3 years before I was told it was ppms, I suppose from lack of relapses. I was well into the menopause when diagnosed so I don’t know whether time of the month had any affect.