#primary progressive

14 Jan 2019 07:07Last reply 8 Jun 2025 17:38

Newly diagnosed with Primary Progressive

I am 62 years old and had in July this diagnosis. I t seems that every case/person is different but I would like to share with someone who also has primary progressive.I have no complaints about my doctors physios etc but just feel a bit isolated and also because I am older it does not seem to ma...

35

@rene1224

28 Feb 2025 06:17Last reply 13 Mar 2025 14:05

What's a good medication that works for primary progressive MS?

First posted on the Shift.ms app

3

@Scrivie

10 Feb 2025 14:48Last reply 13 Mar 2025 09:28

Hi everyone, I have a question how many times are we supposed to have contact with our Ms nurse, I have got primary progressive multiple sclerosis and in the last four years I have only seen my ms nurse for five minutes and had one phone call, is this right xx

First posted on the Shift.ms app

29

@jojou84

27 Feb 2025 10:41Last reply 27 Feb 2025 17:26

Hi I have just joined I have primary progressive ms and get 6 monthly infusions of ocruvus

First posted on the Shift.ms app

3

@Garyone

25 May 2024 12:31Last reply 25 Jun 2024 14:08

I have primary progressive ms and wondered what other people's experience of progressive ms ,symptoms development etc

First posted on the Shift.ms app

6

@Lumoux

13 Apr 2024 20:07Last reply 16 Apr 2024 13:17

Primary progressive research

https://emea01.safelinks.protection.outlook.com/?url=https%3A%2F%2Fwww.youtube.com%2Fwatch%3Fv%3D_peWnQDopNU&data=05%7C02%7C%7C87a07a1f52394e5f4fc508dc53f1ddb9%7C84df9e7fe9f640afb435aaaaaaaaaaaa%7C1%7C0%7C638477545503439411%7CUnknown%7CTWFpbGZsb3d8eyJWIjoiMC4wLjAwMDAiLCJQIjoiV2luMzIiLCJBTiI6Ik1haWwi...

Littlehampton, United Kingdom

Research

4

@Scotii

8 Jun 2023 20:55Last reply 6 Jan 2024 19:55

Primary progressive treatment

I’m just diagnosed primary progressive, to get another MRI soon which I believe tells me if it’s active or not, my neurologist has mentioned Ocrevus, has anyone had any experience with this? I didn’t sound great when my neurologist told me about it

Paisley, United Kingdom

18

@TraceyR

1 May 2023 18:15 EditedLast reply 1 May 2023 20:34

Need to show activity before offered meds for Primary Progressive MS

I have had my diagnosis changed from RRMS to PPMS but my latest scan in April shows it is currently not active, therefore, can not start medication yet. I have lesions showing on my brain, neck and chest but I was unaware I had MS until a year ago so I’m concerned that when the MS becomes active, I ...

6

@MSWarrior84

13 Oct 2020 13:03Last reply 20 Mar 2023 01:38

I was diagnosed with Primary Progressive MS a year ago if anyone would like to talk...

No new lesions at my last scan after two full treatments of Ocrevus

5

@Paige_Wheeler

2 Feb 2019 15:48Last reply 22 Dec 2022 18:59

Primary Progressive ms

I was diagnosed 5years ago with Ppms The other night I woke with severe pains in my diaphragm. I wasen’t sure what it was and thought maybe heart attack. Then I read about the ms hug. Anyone experience this?

8

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