#primary progressive

1 May 2025 08:23Last reply 1 May 2025 08:34

My journey, how many share these experiences?

I am sharing my personal MS journey this MS Awareness Week, because I want other people suffering with this disease to know that they’re not alone in their experiences. There is plenty of hope, laughter and joy to be found alongside MS, and I hope that through sharing my story, I can help others fin...

London, United Kingdom

@mags5966

7 Mar 2025 15:29Last reply 7 Mar 2025 23:25

New here

Hi all. I'm 58. I have Primary Progressive Multiple Sclerosis. I was diagnosed 2 weeks before Christmas 2017. I lost my husband November 23. Found life hard. Weird sensations in my head. Itchy hands. Numb fingers. Pain across eyes. Feels like I'm falling apart. Hope everyone is doing as well as th...

Cambridgeshire, UK

@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

@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

@Ellecharlotte

25 Feb 2025 10:32Last reply 25 Feb 2025 20:44

First MRI after my first Ocrevus infusion / after almost a year being diagnosed.

Do we get these via post? Or do we have an appointment with the Neurologist? I've tried asking my MS nurse but no-one has got back to me as of yet. I only ask because I don't want the results unless I absolutely need to have them. Like I know I've got this crap ass disease but i don't want to know a...

, United Kingdom

First posted on the Shift.ms app

@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

@seancanread

3 Feb 2025 05:38 EditedLast reply 4 Feb 2025 22:46

Progressive MS

i’ve been coping with progressive MS for over 20 years. i’ve been on 3 different disease modifying therapies over that span. When does primary turn to secondary? i’ve never been satisfied with broad descriptions of this diseassesincd it really does seem like e every experience is unique.

First posted on the Shift.ms app

@stumpylumpy

21 Jan 2025 05:37Last reply 13 May 2025 05:41

Accessing services

I'm originally from Yorkshire where my experience of MS support was brilliant at the time I was relapse remitting. Two years they gave me diagnosis of secondary progressive. I moved due to work. But found services here in Somerset are obismal. No sign of contact from Ms nurse. Primary care GP hav...

First posted on the Shift.ms app

@Burgers1

15 Nov 2024 13:21Last reply 16 Nov 2024 18:14

Trying to win but struggling

Hi everyone New to this .Not to cause a division but has anyone got primary progressive MS ? Which I have . Somedays it feels like a slow motion death, as my walking slowly declines etc I have a drop foot which apparently can't be fixed aswell as, all the other aches ,pains and worries.

First posted on the Shift.ms app

@watsoncraig

12 Sep 2024 16:54 EditedLast reply 12 Sep 2024 17:50

Hope

We look forward to your post on the topic For all of you interested: watch out for news of TOLEBRUTINIB and FENEBRUTINIB, for us progressive MSers, in the upcoming Euopean Congress of MS in Copenhagen, Denmark (ECTRIMS). Currently in phase III (the last before filing to EMA or FDA), the drugs coul...

First posted on the Shift.ms app

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