#primary-progressive

10 Oct 2016 13:37Last reply 12 Oct 2016 11:11

Just Been Bullied By Neurologist

So, after, what turned out to be a relapse about a year ago, I was diagnosed this January with relapsing remitting MS, after two MRI's. I decided against having any treatment, as I wanted (and still do) to try and control the disease with diet, nutrition etc and see how it went. So far so good, I fe...

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@Kat_Merritt

27 Feb 2019 18:00Last reply 1 Mar 2019 07:07

New and confused

Hello, I've recently been diagnosed with primary progressive multiple sclerosis and even though it explains why I'm in agony and tired all the time, I haven't been offered any help or support of what I expect or how to deal with it. My family aren't the sort to offer help or support. My partner has...

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@Crystal-2017

17 Nov 2017 16:11Last reply 23 Nov 2017 18:04

Newbie

Hi everyone, i am new to this site, so please bear with me. I was diagnosed on 5th October 2017 with Primary Progressive MS. Unfortunately the neurologist who gave me the news, made me feel like my life had ended. He was so negative and said there is nothing they can do for it. I am awaiting r...

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@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....

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@Scott_Alderson

2 Sep 2020 17:56Last reply 2 Sep 2020 18:34

Greetings and salutations!

Hello from Calgary,Alberta ,Canada. I am Scott, diagnosed May 10/2012 Primary Progressive Multiple Sclerosis. Poet with 8 books in print(2017 release "Imaginative Spasms". 5 YouTube videos(Scott Alderson Poetry). Life is good, just different. Still human, simply modified. Hope for today is that y...

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@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...

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@Anawith1n

19 Oct 2015 04:31Last reply 20 Oct 2015 04:51

The drug, called Ocrelizumab,

2015UPDATED 13:21, 9 OCT 2015BY JOHN VON RADOWITZ The drug, called Ocrelizumab, is the only known treatment for the disease shown to help one in ten patients A drug is offering hope to sufferers of multiple sclerosis (MS), with experts dubbing it a "game changing" breakthrough. Ocrelizumab has sho...

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@FrankyJack

13 Jun 2018 11:02Last reply 14 Jun 2018 12:29

Hello, new member just saying hello.

Hi guys, my name is Francis, from West Yorkshire. I joined this group/community as my mum has Primary Progressive MS. She was diagnosed in 2005 but had symptoms for about 6 years before the diagnosis. I'm her full time carer. I've been following the Shift MS twitter account for a few weeks now, it...

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@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

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@PaulGriffiths

2 Nov 2018 09:34Last reply 14 Dec 2018 11:38

https://shift.ms/my-experience-of-using-

My experience of using cannabis as an alternative to using prescribed drugs to aid my MS symptoms. Having been diagnosed with Multiple Sclerosis in April 2004, I have gone through Relapsing Remitting (RRMS), Secondary Progressive (SPMS) and now for the past couple of years find myself at the Prim...

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@FrankyJack

19 Sep 2018 17:03Last reply 11 Oct 2018 22:09

Let's talk about bladders :)

Hi guys, this may be a bit lengthy and I'm not the most articulated of folks, so please bare with me. I would appreciate some feedback/opinions. My mum has Primary Progressive MS, she has very poor mobility, wobbling around the house with the use of hand rails and is wheelchair dependent outside. ...

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@holtyc

17 Aug 2018 06:39Last reply 23 Aug 2018 10:26

Mavenclad/Cladribine

Hi, My dad has Primary Progressive MS, he has been told by his neuro consultant that a new drug called Mavenclad/Cladribine is his best chance of stopping progression, and that it has been shown to stop progression in a third of those with PPMS. However, after MRI's theyve decided they wont give i...

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@robb

5 Mar 2018 08:15Last reply 2 Apr 2018 21:38

Muscle spasms

Hi everyone I have a question I’m hoping somebody can help me with, I was diagnosed with MS5 years ago primary progressive. My spasms are getting much worse and Are getting out of control, I do use some baclofen and cannabis but they’re still ridiculously bad. I do stretches every other day so don...

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@stoney02

16 Oct 2015 20:51Last reply 23 Oct 2015 11:02

Confused

Hi all just diagnosed with primary progressive ms confused about what to expect

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@choozysuzy

13 Mar 2013 17:32Last reply 14 Mar 2013 18:01

Iron Maiden

Heard today that Clive Burr..the original drummer from iron Maiden died.He had Primary Progressive MS .Thanks goodness no report yet has stated that he died FROM MS.

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@D1970

3 Dec 2019 18:59Last reply 23 Jan 2020 08:19

ocrevus

Hi, I'm a 49 year old man diagnosed with MS in August this year. My MS is most likely primary progressive and I have just been told I can start Ocrevus treatment next year. I'm getting pretty worried looking at the list of potential side effects and am wondering if anyone here has personal experienc...

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@FrankOZ

26 Feb 2018 03:52Last reply 26 Feb 2018 19:32

MS

So lets upset everybody. I have Primary Progressive MS, diagnosed 9 years ago so I am officially part of the forum but my ideas are a bit different. I do not think there is a simple cause of MS, like a disease bacterial or viral, which can be treated. Sadly is is very like a lottery, there are milli...

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@Cassy

6 May 2020 06:20Last reply 7 May 2020 16:26

WHEN MS STRIKES IN RETIREMENT

HI Awaiting a diagnosis but confident I have MS..late onset as I am 65.From Reading it seems late onset is primary progressive MS and it feels progressive as my legs weaken and I developed foot drop. Please is there anyone on this site who got a diagnosis late in life and how they coped as retiremen...

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@Angela_Ewing_Miller

8 Feb 2020 02:57Last reply 8 Feb 2020 21:52

Ugh not again!

Diagnosis at 22. Suspected since I had mono at 17. Now 36 in primary progressive i fear. Been on Tecfidera for 7 years with relapses. Changing over to ocrevus. Fighting to keep walking and spasms like crazy. In hospital again. Searching for words of encouragement please.

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@NickyJax

7 Sep 2019 22:51Last reply 9 Sep 2019 14:36

New to this site

I am from Minnesota, I have been married for 32 years, we have 3 grown children, and 2 grand children. I have had MS for 20 years, was diagnosed in 1999. I have been on 3 different meds, started with copaxone, loved it, was working great, so I thought until I went to a new nuerologist and he gav...

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