#primary-progressive

14 Jan 2019 07:07Last reply 15 Jan 2019 08:25

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...

9

@dave

2 Jul 2009 11:34Last reply 30 Sep 2016 03:34

primary progressive anyone?

I recently got diagnosed with primary progressive MS. I know that any type is bad but when ever i talk to anyone about it they say "it's not that bad", "i have a friend with it"..... and it always turns out they have the remitting one. Does any one with the progressive kind, feel trapped? and doomed

7

@Anitole78

9 Aug 2016 12:32Last reply 28 Aug 2016 18:01

Primary Progressive Multiple Sclerosis

Last year, when I was diagnosed with multiple sclerosis, my world ended. I have heard stories of how autoimmune disorders ruin lives, so I believed that's what would happen to me. Over the past year, I've read more literature, and read some success stories. One story that I've read was a book wr...

6

@Paige_Wheeler

2 Feb 2019 15:48Last reply 4 Feb 2019 11:22

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?

5

@Matie-K

16 May 2018 19:57Last reply 17 May 2018 13:34

Diagnosis-primary progressive

I was diagnosed the other with primary progressive MS. I am 32 year old female and was wondering is having children an option anymore? It was one of my first questions as I really wanted children.

5

@dam205

2 Jun 2020 11:10Last reply 2 Jun 2020 17:31

Primary Progressive MS - A touch Lost

Hello all, Well I don't know where to begin!? Guess I should start here. Joined this site nearly 4 years ago just after I was diagnosed. I have had this thing approximately 20 years. Not on any medication, not that there seems to be much, the same as help with this - not much. I suppose when I w...

4

@JeanetteKent

3 Oct 2018 20:14Last reply 9 Feb 2019 11:10

Treatments for Primary Progressive MS

Hi, I am new to shift ms and am wondering is there anyone who is on or knows anything about Rituximab? There are hardly any treatments for PPMS and my neurologist briefly mentioned this, but only in a letter after my consultation. I can only walk very short distances with a stick before my legs sta...

4

@Matie-K

17 May 2018 19:33Last reply 18 May 2018 05:13

Primary progressive

I am 32, is this young to get this particular type? Also what I can expect? Apart from the unexpected. What have others experienced?

2

@Jackie_Brauer

26 Jul 2019 15:34Last reply 26 Jul 2019 21:10

HSCT Primary Progressive MS

Has anyone gotten the HSCT procedure that has primary progressive MS? I spoke with one of Selma Blair's friends who had it done and she suggested a Mexico clinic for PP MS. I heard Mexico and didn't think that sounded safe, but I'm just beginning to learn about HSCT and it's benefits. The whole p...

1

@MSWarrior84

13 Oct 2020 13:03Last reply 13 Oct 2020 14:58

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

1

@RachaelLouise

6 Jan 2018 18:08Last reply 8 Jan 2018 12:56

How have all these people got better?

How of all these people got better with ms ? If you can’t cure it and it’s progressive how have they gone into remission ? They can’t have all been misdiagnosed or been ‘mild’ or benign ms . And not all on drugs . Stats say by 10-15 years go in from RRMS to Primary progressive . Some had been pro...

38

@wesley

26 Jun 2014 00:09Last reply 12 Oct 2014 09:17

MS Documentary - When I Walk

Hello, Back in October of 2013 I posted a note about a documentary about a young man with Primary Progressive MS. When the movie was released, I became a promoter in order to host an event in my city to raise money and awareness for the local MS Chapter in RI. The event was a success and the movi...

23

@TomWilkins

19 Aug 2020 08:42Last reply 19 Aug 2020 19:14

Hi new guy here

Good morning everyone , I just joined yesterday and I’m looking for advice already lol , oh I’m primary progressive my latest issue is getting in and out of shower something I didn’t see coming I have a 4 inch step up to get in and due to foot drop I have to drag my other foot in I do have a AFO bu...

20

@chrisgait86

3 Aug 2014 19:14Last reply 6 Aug 2014 09:57

Police arrest ,MS sufferer!

I am an am an ms sufferer and was only recently diagnosed with primary progressive MS, I am unable to walk and use a wheelchair to move around.I also live on my own. On tuesday the 8th of July their was several gentle knocks at my front door at 1.30 in the morning. I was asleep in bed and awoke to t...

17

@nobodyin

24 Sep 2018 08:52Last reply 1 Jan 2019 12:24

diagnosis confusion?

Hello all, having recently been diagnosed with primary progressive MS, after an uphill fight of over a year to get a diagnosis, I wonder if anyone else on here has had a diagnosis blaming alcohol abuse for their MS. My latest clinic letter, after an MRI of my brain and spinal cord with dyes would se...

17

@Purl2

7 Jun 2017 19:25Last reply 4 Jul 2017 18:53

Knees!

I just wanted to ask if anyone is dealing with their knees HYPER-EXTENDING? I'm dealing with Primary Progressive, so don't really know if this is unique here. If so - what are you doing about it?? I haven't done regular physical therapy in years - but keep up with my yoga myself, and other exercis...

16

@Barry_Starck

22 May 2019 17:46Last reply 24 May 2019 10:28

Hey there

Hey there... recently diagnosed with Primary Progressive MS... don’t really know what I was expecting support wise but so far... just kind of feel alone

14

@Alex_Bolland

13 Aug 2020 16:05Last reply 16 Aug 2020 10:57

Never given a chance.

I have primary progressive MS, and have been trying for a long time to get access to ocreveus, they tell me you have to have recent activity in your brain or you will not get it, i feel my condition has worsened and surely this treatment is worth trying whether you have any brain activity or not, i ...

14

@Almost

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...

13

@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...

13