Hi. Feeling lonely and isolated; anyone else get a PPMS diagnosis aged 43 or under?

Primary progressive MS
1

Sorry to be all me me me, but if I had gone to the GP with my symptoms in late2007 I probably would have got a PPMS dx in 2008 as a sprightly 38 year old. (The reason I didn’t; my wife is a Consultant Orthopaedic Surgeon and told me not to bother, probably a back/hip thing, old sports injuries coming back to haunt you etc etc etc).

Rant over, but anyone else out there my age or below suffering with PPMS?

Sorry for being so forward.

Pigeon ‘who has joyfully thrown the empty steroids bottle away’.

2

Not that much older Clucker Pigeon - I was 46 when diagnosed and 42 when symptoms first made themselves known! Teresa xx

3

I was dx at 50 and as per recent posts of mine have mentioned, I’m slowly getting worse and don’t know what to expect.

Trivial accidents and a recent university survey made me think that I’m sh–.

The survey asked questions that made me think about problems, rather than ignoring trivial issues, as I’ve done in the past.

Everyone knows I’ve got ms, but don’t talk about it except to my wife and two pals who notice my limp is getting worse.

John.

4

I was diagnosed 2 years ago at 45. Thinking back symptoms had been there for about 10 years!

Sarah x

5

Hiya

Beat yer all on diagnosis dates/age. Well… the official year was for rr ms at the age of 32. Like everyone, I suppose, it started much earlier, though.

The neuros mumble something about secondary progressive from 2002 or sometimes it’s 2008.

Never mind, just bumble on…

Take care.

Marty

6

Hi, I was 55 when dx, but I had symptoms at least 10 years before then. So was certainly in my early to mid-40’s when peculiar things started to happen.

Some people get dx PPMS in their 20’s (in fact we had a young woman on here year or two ago… I think she was 22)… so I suppose it’s just that majority of people are in 50’s.

But I don’t think the longer you have it means the more disabled you get… if you see what I mean. It still will progress differently for everyone. Remember we have one PPMSer on this board who was dx over 40 years ago.

Pat x

7

I was 45!!

25 years when first symptoms strarted with numb fingers and lips. 27years Optical Nueritis! 41 years when I couldn’t walk properly.

Here I am with a PPMS diagnosis!! Life sucks

8

Hi

I started with problems of numbness aged 29 and was finally

diagnosed some 5 years later, which was many moons ago now.

I know it is really difficult to accept diagnosis, and although I was

in complete denial and tried to ignore it, eventually I felt relieved to

know what was causing my problems and accepted it, although this

did take some time.

Luckily for me (if that is the right word) progression has been slow,

going from sticks, crutches, manual wheelchair and on to powerchair,

but life is still good, obviously some adjustments need to be made.

Take care

Pam x

9

Hi Clucker, I know it is hard but try and be positive. Have you looked into LDN , fampridine and sativex? Sativex is supposed to be neuroprotective as well as help with spasticity. I have spasticity is calf and rectus femoris muscle on right leg which gives me a stiff knee gait. I am currently looking into a rectus femoris transfer and botox in the calf to help. Your wife may be able to advice you on that. I am still not dx. Having another MRI in June and if the brain is clear again then I dont know what he will say! As I dont have a dx the docs are not prepared to give me anything other than baclofen.

It is really quite strange but when I feel down I hear something which puts my situation into prespective - like an old friend being dx with motor neuron disease with an expected 6 months to live.

Life just sucks at times but we need to carry on with a brave face - hard I know.

Take Care

Moyna x

10

Hi Clucker, I know it is hard but try and be positive. Have you looked into LDN , fampridine and sativex? Sativex is supposed to be neuroprotective as well as help with spasticity. I have spasticity is calf and rectus femoris muscle on right leg which gives me a stiff knee gait. I am currently looking into a rectus femoris transfer and botox in the calf to help. Your wife may be able to advice you on that. I am still not dx. Having another MRI in June and if the brain is clear again then I dont know what he will say! As I dont have a dx the docs are not prepared to give me anything other than baclofen.

It is really quite strange but when I feel down I hear something which puts my situation into prespective - like an old friend being dx with motor neuron disease with an expected 6 months to live.

Life just sucks at times but we need to carry on with a brave face - hard I know.

Take Care

Moyna x

11

Hi, i was diagnosed with PPMS in 2010, i was 36 years old, big shock but just trying to get on with life!!!

12

I WAS 44 NINE YEARS AGO

13

I was 23; 40 years ago. Fair enough there were no PPMS; RRMS tthen only MS; but since turned out to be PPMS I think?

14

Diagnosed at 44, 9 days ago!

15

Diagnosed at 44, 9 days ago!

16

Diagnosed at 45 years old . Seems to be a popular age. Damn and I wanted be different .

17

LOL Eric… at least with ppms we are in an elite little group!

Pat x

18

I was Dx with PPMS at 48, first systoms about 40. Tim

19

Hi

I started having problems 2007 and got DX last July aged 42.

20

Hi I was 38 when I was diagnosed 17 years ago. My best friend was diagnosed at 38 and we were both nurses and both our youngest daughters were 9 years old at that time. Strange coincidences.

Lynne xx