Primary Progressive MS (PPMS)

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Patients Multiple sclerosis

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• Community manager
Posted on
Good advisor

In this discussion membres affected with PPMS (Primary Progressive Multiple Sclerosis) will be able to exchange experiences related to this particular type of MS.

You can talk about the diagnosis and the the way your medical team explained to you the disease and its types. Also, any questions/comments related to PPMS and to MS in general are welcome.

Let us help each other with information and support emoticon wink

Beginning of the discussion - 27/02/2018

Primary Progressive MS (PPMS)


Posted on

It wasn't so much a "team" I had just one man, my neurologist at that time & he couldn't really be bothered with me so had me change to a different Neuro' & he's actually nice when he has the time to see & talk to you. I see a surgeon this coming Thursday to have a pre op' assessment as I'm having a baclofen pump inserted into my body which regulates how much baclofen in administered into my spine to loosen the tendons in my legs so they can finally be straight & no longer twisted & stiff. I cannot wait for that day!! I may even put bunting up around the place I live & have a party.

Primary Progressive MS (PPMS)


Posted on

@hayles I really hope your treatment goes well today. 

Sending gentle hugs & prayers x

Primary Progressive MS (PPMS)


Posted on

Hey Michelle, thanks so much but I was unable to go as we have a lot of snow here where I live. My hubby got intouch with the hospital & they knew about it so they've pencilled me in for Tuesday so that's good, not too long to wait. xx

Primary Progressive MS (PPMS)


Posted on

 Hi, my name is Nathalie and i have just celebrated my 30th birthday yesterday and I have newly been diagnosed back in Nov with PPMS and I was wondering how long have you been diagnosed for and how you manage with it? Any help and tips would be deeply appreciated. Thank you.

Primary Progressive MS (PPMS)


Posted on

Hey Nathalie I'm so sorry you've been diagnosed with PPMS. I was 35 when I was told I had it, they also said I had had it for about 7 years previous to that. What they didn't tell me was I had a rapid form of the disease. I'm 44 now & I can no longer walk & have been placed on bed rest since last Nov'. I have no advice to give you sorry other than live every day like it's your last & cherish your friends. I was never told this would happen to me so fast & I truly hope it doesn't affect you as bad, it possibly won't. No two people are the same. I wish you all the best in your fight as that's what it is from now on. Much love xx

Hayley x

Primary Progressive MS (PPMS)


Posted on

Wow Hayley am so deeply sorry that this has rapidly progressed that's what scares me so much is that it will debilitate me so fast before my life has really begun, as me and my boyfriend are thinking of starting a family in the next year or 2. I do try to live my life as normal as possible as I feel normal aside from the numerous pain meds I have to take however, but I have a brilliant support system who help me a lot. I really appreciate your help Hayley and I wish you all the love and support in the world.

Nathalie xx

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