Forum

At last, it's official; PPMS

Has taken just over 6 months from GP visit to final diagnosis. C-spine and Brain MRI’s positive, LP negative. Symptom progression for past 5-6 years, male aged 43, fyi.

Weird feeling, nevertheless, despite the expectation.

Will leave the stage and say chin and be strong all; am off to to the PPMS board to seek advice.

Take Care.

The Pigeon on Steroids.

Sorry for your diagnosis, big hug xx Sam x

Glad you got an answer after so many years of symptoms. I don’t often venture onto the PPMS board, but I’ve heard that it’s a great, really supportive community so I’m sure you’ll get loads of help there Karen x

Hi, the PPMS board is very friendly…but they all use other boards too.

luv Pollx

Sorry you have had your suspicions confirmed, Mr P. A weird feeling, indeed. Good luck with it all. Alison

Sorry about your diagnosis but glad that you will know get the care you need. Can I ask about your history 5-6yrs to diagnosis?? I’m struggling and it’s only Been a year! How did you keep going? Best wishes

Hi need some advice please. I was diagnosed on weds 1st may. I had suspected for a long time that it is ms so no big shock. Just wondering what meds people are on as I now have to choose. I was thinking copaxone as from what I’ve heard/read has fewer side effects. Is that the case? Thanks in advance Leanne

Oops sorry shouldn’t have posted here!

Cocochanel. For about 6 years I have been suffering with progressive disability with regard to movement, stiffness, and lack of balance co-ordination down my right side. 6 years ago I could run half marathons, just. 4 years ago I could only run for about 3 miles (yet was easily able to ‘row’ for 10!) and 3 years ago I couldn’t run at all and still can’t.

However, I’ve never really been in any ‘pain’ (apart from when i tripped over running and broke a finger, or slipped and fell whilst out shopping on a paving stone raised only about 1cm!). This is what makes PPMS different from RRMS, and the overwhelming bulk of people/posts on this part of the forum are RRMS sufferering related. From what I’ve read of RRMS, it is often characterised by a lot of painful episodes of some intensity. Not so PPMS, at least not for me anyway-not yet.

No doubt it will all change in time, but the reason I’ve been diagnosed so late on is that I only really felt the need to go to the GP in November last year when the private physio I booked myself to see (assuming I had some sort of complex sport-related muscle/ligament issues) suggested, in no uncertain terms, that I really needed to do so and would be contacting him that day; she is an excellent, highly recommended physio and I guessed I needed to follow her advice…so here we are now.