Primary Progressive MS (PPMS)

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Margarita_k

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16/02/2018 at 14:53

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Margarita_k

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Last activity on 07/10/2020 at 11:39

Joined in 2016

1,195 comments posted | 88 in the Living with multiple sclerosis group

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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

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hayles

27/02/2018 at 20:17

hayles

Last activity on 05/05/2025 at 20:45

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7 comments posted | 6 in the Living with multiple sclerosis group

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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) https://www.carenity.co.uk/forum/other-discussions/living-with-multiple-sclerosis/primary-progressive-ms-ppms-2181 2018-02-27 20:17:08

Beautiful_Disaster

01/03/2018 at 12:32

Beautiful_Disaster

Last activity on 28/09/2021 at 15:57

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4 comments posted | 1 in the Living with multiple sclerosis group

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@hayles I really hope your treatment goes well today.

Sending gentle hugs & prayers x

See the signature

Michele x

Primary Progressive MS (PPMS) https://www.carenity.co.uk/forum/other-discussions/living-with-multiple-sclerosis/primary-progressive-ms-ppms-2181 2018-03-01 12:32:28

hayles

01/03/2018 at 13:23

hayles

Last activity on 05/05/2025 at 20:45

Joined in 2018

7 comments posted | 6 in the Living with multiple sclerosis group

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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) https://www.carenity.co.uk/forum/other-discussions/living-with-multiple-sclerosis/primary-progressive-ms-ppms-2181 2018-03-01 13:23:24

Nathaliedee1

13/03/2018 at 19:36

Nathaliedee1

Last activity on 12/03/2025 at 11:54

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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) https://www.carenity.co.uk/forum/other-discussions/living-with-multiple-sclerosis/primary-progressive-ms-ppms-2181 2018-03-13 19:36:07

hayles

14/03/2018 at 07:05

hayles

Last activity on 05/05/2025 at 20:45

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7 comments posted | 6 in the Living with multiple sclerosis group

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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) https://www.carenity.co.uk/forum/other-discussions/living-with-multiple-sclerosis/primary-progressive-ms-ppms-2181 2018-03-14 07:05:01

Nathaliedee1

03/07/2018 at 10:13

Nathaliedee1

Last activity on 12/03/2025 at 11:54

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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

Primary Progressive MS (PPMS) https://www.carenity.co.uk/forum/other-discussions/living-with-multiple-sclerosis/primary-progressive-ms-ppms-2181 2018-07-03 10:13:07

Primary Progressive MS (PPMS)

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