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back from MS Specialist

well folks
he was awesome in his approach to all this such a nice guy !!!
he said everything else has been ruled out and the only thing left on the table is  PPMS
we had a long chat about my history and ongoing symtoms after he gave me another neuro exam .

he said he could see things have changed in my exam but because my scans were not giving him enough info just to be 100% sure he wants me to have a samatosensory evoked potential test to confirm my cns has been compromised in two places as my vep was abnormal. and he knows my spine has been hit

if it proves what he beilieves is happening to the nerve  signals he will cal the dx officially in a couple of months.

wow finally have an answer to whats been happening for a long time dont know wether to laugh or cry but prob the latter lol
thanks guys for all your support through this.
best regards mick

Hey Mick always better the devil you know than the devil you don't!

Really pleased to hear you have a good neuro and he's listening and doing all the tests.

Expect a mixed bag of emotions... yes relief was certainly one for me and then suddenly it would be 'OMG PPMS'... but go with the flow Mick.

Take it easy,

Pat x

Hi Mick
I saw the MS specialist last Wednesday and finally got the dx I was expecting, that is, PPMS. Like you, I didn’t know whether to laugh or cry. I felt relief that the uncertainty was over but sadness at the reality of the dx. But as Pat said I guess it’s better the devil you know…

Anyway I can understand exactly how you are feeling now. Keep your chin up!

Best wishes,

Teresa xx

hi pat and teresa

thanks for your replys

yes i am going through alot of emotions at the moment but it will get easier to deal with i know its what i expected it to be but its still a shock as to what will be and how long before things get alot worse.

regards mick

 

Hey Mick don't think about how long before it gets worse. There are people with PPMS who have carried on working and walking for years and years, and even when it has got worse there's no way of knowing if it will continue to get worse. It can 'plateau' and stay the same for the rest of your life.

There's no way of knowing so no point in thinking about it. Which, when you think about it, is the same for people WITHOUT MS. Nobody on this planet knows what tomorrow will bring, it's just that MS sort of makes it more 'in your face'. If  you think about it like that, MS can teach us some valuable lessons. I try to remember that... I don't always manage it, but I do try.

Pat x

Hi Mick

I think all any of us can do is "go with the flow" cos nobody knows for sure how things will turn out, but I suppose nobody knows what is around the corner for them, ms or not.

 

I have had ppms for more than half of my life now (what a dreadful thought) and yes I have used a powerchair for nearly 20 years now, but it didn't happen overnight.  It was a slow process whereby I went from sticks to crutches and eventually onto a chair, but life is still ok.

 

It is different to what I had planned, but still a good life Mick, keep your chin up and take care.

 

Pamhappyflower

thanks for your reply

and have took on board the advise you give and will take each day as it comes and enjoy the good days for what they are.

i have to regroup and face it head on and keep fighting as i wont let it beat me cos i own it and it dont own me !!!

thanks again and merry xmas to you all

regards mick