#primary-progressive

12 May 2022 10:10Last reply 12 May 2022 12:41

No help.

I've had primary progressive ms for about seven years now and have never been offered any treatments, does it depend on where you live.

2

@Ammers49

11 Apr 2022 22:45

I have ppms

Hi my name is ann-marie I'm 49 I've been diagnosed with primary progressive ms I have my good days and bad days I hate it when I have a flare up

@Jeremy1

26 Mar 2022 09:41 EditedLast reply 26 Mar 2022 20:27

I started to have tingling in my hands some 25 years ago. The GP said it was possibly a trapped nerve and my age. I was nearly 50. After 3 years of different causes and different doctors I had a private lumbar puncture and was diagnosed with primary progressive MS.After a year I heard from a friend ...

Bristol, United Kingdom

5

@Ireneb74

27 Sep 2021 12:50Last reply 8 Mar 2022 09:52

PPMs

Just been told I have Primary Progressive MS. wow!!! What should I be thinking/doing?

Edinburgh, United Kingdom

13

@Jimmytree

26 Feb 2022 08:47Last reply 26 Feb 2022 09:42

Just nearly diagnosed

Hi guys, I have been just diagnosed with either primary progressive or rrms they are just waiting for my lumbar puncture results to give the final verdict. I’m 32 years old fairly active guy have a company with over 50 staff what is next for me anyone have any advice. Anyone in London that I could ...

London, United Kingdom

3

@raminazzal

4 Feb 2021 01:10Last reply 14 Feb 2022 20:46

Dear Fellow MS ers

Dear Friends. My name is Rami. I was diagnosed with MS in 1985, when I was a 21 year old I got Optic Neuritis, For those not medically literate or knowledgeable, my right eye started flickering like a windshield wiper. The Drs in emergency thought I had a brain aneurism, burst or bulging bloo...

Markham, Canada

5

@DJL88

8 Feb 2022 23:37Last reply 9 Feb 2022 20:08

What treatments can I have?

Hi, I’m new to shift and this is my first post. I was diagnosed with primary progressive MS around 2 years ago. Although the more I think of it I have had it much longer based on the different symptoms I have read about since my diagnosis. I get MRI scans every 4 months and have not had any progr...

5

@Helen_Weeks

3 Jun 2021 21:22Last reply 18 Jan 2022 12:35

advise appreciated 😊

Hello I was diagnosed with rrms in 2009 and to date have recovered fairly well from relapses. I have been taking tecfidera since 2017 and am starting fingolimod later this month. Has anyone started this and noticed a big improvement in their condition? Over past couple of years I have noticed I am ...

Wakefield, England, United Kingdom

4

@Danielle924

24 Nov 2021 21:54Last reply 29 Nov 2021 00:51

Just sharing some info.

ImS001 in patients with RRMS, Secondary, or primary progressive ms with prior treatment failure with Disease modifying treatments. This treatment is being held in Atlanta. There is a high and low dose therapy. 1 treatment. The treatment uses cells from donors and is administered through intravenous...

2

@Karen2001

14 Oct 2021 14:17Last reply 27 Oct 2021 22:26

Hi I’m new here

My name is Karen I have have had MS for six years and it’s primary progressive I am going for a infusion on Wednesday it’s called Ocrevas. Has any one had it please and give me any information on it please XxX. ♥️

2

@Ang49

10 Aug 2021 10:51Last reply 11 Aug 2021 11:09

Newbie

Hi, I am new to this. Never thought I'd feel the need to speak to others but boy am I scared. I don't know where to start. I have primary progressive but from the date of diagnosis, I take no disease modifying drugs. My choice and I'm happy I did but over the last week or so, I am struggling to walk...

5

@Carla44

4 Jul 2021 19:41Last reply 4 Jul 2021 21:23

Hi

Hi I've recently been diagnosed with Primary Progressive MS. It's taken a long time to get a diagnosis after being forgot about by the system and having to keep chasing. I finally have an answer as to why my left hand side is not working properly. I've got an MRI scan with contrast soon which will s...

8

@MarkC73

4 May 2021 23:03Last reply 6 May 2021 08:00

Hello everyone

Very newly diagnosed (02/2020) with I’m told either primary progressive or primary relapsing. Went from a site carpenter/joiner to barely able to keep myself standing up in 2 years. I’m on my 2nd ocrevus and never felt worse although this may not be the infusions fault. Infusion confusion haha. Ju...

Sunderland, England, United Kingdom

11

@Elixir

10 Mar 2021 13:13 EditedLast reply 11 Mar 2021 21:51

Help, newly diagnosed RRMS

Hi there, I've recently been diagnosed with Relapsing/Remitting MS. My Papa (grandfather) had Primary Progressive MS and sadly died 2 years ago, due to UTI complications, which caused seizures and a coma. I first went into hospital in September, after I woke up with severe vertigo, migraine, naus...

12

@Renee_dc_

23 Feb 2021 06:57Last reply 23 Feb 2021 16:56

Relapses / symptoms

Sorry for the rant in advance but lately I’ve been stressing over symptoms and what they could mean for how my ms is progressing. When i was first diagnosed 4 years ago i had a crazy burning sensation all over my body and a completely numb left side for months and since then i’ve had no way to tell...

4

@Taffiedaffie

15 Feb 2021 22:29Last reply 16 Feb 2021 21:38

Ocrevus ppms covid

Hey I'm looking for advice I have ppms and I'm due my ocrevus treatment soon I have read articles saying they are not sure about giving ocrevus during covid pandemic especially to people with primary progressive ms as it's seems to be a risk. Does anyone have any information on this?

4

@Feudal

28 Jan 2021 10:00Last reply 28 Jan 2021 15:42

New here

Hi all :) I got diagnosed with primary progressive ms last month and am sort of in limbo as to what will happen from now on. Any info as to what to expect would be great as I'm a bit confused with it all.

Southampton, United Kingdom

7

@lindsie32

6 Nov 2020 00:29Last reply 6 Nov 2020 18:33

just wondering how long does it take to end up using a wheelchair if you have PPMS or is it just different per person

Just wondering how long does it take to end up in a wheelchair if you have primary progressive MS Or is it just different for every person

7

@Allan_Harrison

3 Sep 2020 11:49Last reply 13 Sep 2020 12:00

New to MS, and to this group

Hi all, I'm a 52 year old male just diagnosed with Primary Progressive MS. It's mostly affecting my left leg so far, with foot drop, altered gait and weakness. I can no longer stand up from a squat on that leg, which is scary for a guy who's been healthy, strong and physically active his whole life....

6

@Allan_Harrison

3 Sep 2020 09:49Last reply 13 Sep 2020 05:38

New to MS, and to this group

Hi all, I'm a 52 year old male just diagnosed with Primary Progressive MS. It's mostly affecting my left leg so far, with foot drop, altered gait and weakness. I can no longer stand up from a squat on that leg, which is scary for a guy who's been healthy, strong and physically active his whole life....

12

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