Hi Kylie
Was amazed reading your post as your life history and symptoms are almost identical to mine and it was like reading my own life story. I too started with what I believe are MS symptoms at the age of 10 (school swimming lesson, lost feeling in legs, started to drown in deep end and had to be rescued - still afraid of water to this day).
However, I am now 50 years old in two months time and still no diagnosis. I have kept a diary all these years recording the symptoms but feel that no-one seems to believe me. It’s a terrible disease as the injustice is often that externally I look okay and people actually say to me ‘well you dont look like there’s anything wrong with you!’.
I feel like my body has been gradually destroying itself from the inside.
By the way, does anyone know the actual criteria for getting a diagnosis of PPMS?
Any help much appreciated
Dianne
Thanks Dianne, I was told I have PPMS, they didn’t know at first but they realise it wasnt beging and I have more then one symptom, It isnt RRMS as this has flares of ups and downs when the pain I have hardly goes and lingers, SPMS is what you have after RRMS so it cant be that so they said it was either PMS or PPMS and they said PPMS is more commen in older people and that there is probs 1/100 people with PPMS that are younger then 40, but they said because ov my past and the up to date symptoms it sounds like it is PPMS.
Hope this has become handy.
Kylie x
Hello Kylie, I am ‘visiting’ this forum from the one I usually go to - EveryDay Living - but as I have a daughter about your age, I just wanted to reach out to you to say ‘hi’, send a hug over the internet and to say I was thinking of you. I recognise all your symptons which are very much like my own and which you describe so well. I am glad you have good friends around you, who will learn from you about how they can help to support you and will most importantly help you to carry on having a laugh and be yourself as well as having to face up to your diagnosis. Good luck. Hope you get all the help from the medical profession that you deserve. People here on these forums will have lots of useful info and suggestions to help too.
Big hug
Gill