#primary-progressive

@MSWarrior84

13 Oct 2020 13:03Last reply 15 Jan 2023 15:52

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

2

@lizelliott

14 Jan 2019 07:07Last reply 15 Jan 2023 15:17

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...

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@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

@2012ashleigh

21 Sep 2022 10:06Last reply 22 Dec 2022 16:15

I have primary progressive ms for 7 years now

I got meylena this month never had treatment before. So I feel very excited. My MRI doesn't show any new lessons in the brain but ons straight one at my spine. Why only there?

4

@Remika

19 Dec 2022 20:51Last reply 20 Dec 2022 00:58

Primary Progressive

So today I was told that I likely have Primary Progressive MS. Immediately I started doing research and I am just so bummed. I was really hoping this thing wouldn’t take too much from me but that doesn’t seem to be likely now.

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@Eanzi30

18 Dec 2022 14:49Last reply 18 Dec 2022 15:38

Primary Progressive

New here, I was diagnosed 3 1/2 years ago but when I think back I’m pretty sure I’ve had MS for at least 20 years. Last time I saw my neurologist she said I was at primary progressive and has kept me off of meds. I feel physically that I have progressed since I’ve last seen here…I go and see her nex...

Independence, United States

2

@brandee1177

1 Jul 2022 20:50 EditedLast reply 4 Aug 2022 21:45

Advanced Aggressive Primary Progressive

I struggle every moment of every day and my case is so advanced that I’m close to needing a wheelchair. I was an athlete and a genius iQ of 140! Now I can’t remember the name of my best friend if I don’t sit and think for a second. I cannot jump hurdles anymore. I was an all state won first place i...

5

@dave

2 Jul 2009 11:34Last reply 4 Feb 2022 06:41

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

9

@mcknighm77

18 Feb 2021 17:55Last reply 7 Aug 2021 09:58

Hi I’ve been diagnosed with primary progressive MS in 2017.

Does anyone experience heaviness in legs or foot drop?

14

@ashleynw1

27 Feb 2021 14:01Last reply 1 Mar 2021 17:25

Trouble walking with Primary Progressive MS

When I was diagnosed with MS in June of 2020, I could only walk for a few minutes at a time. I had steroids then which drastically improved my walking, but now I'm back where I started. I can just walk for a few minutes, and even that's a struggle. Does anyone have tips on improving walking? I'm ter...

London, United Kingdom

3

@dam205

2 Jun 2020 11:10 EditedLast 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

@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

@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

@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

@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

@Ireneb74

20 Jan 2023 10:45Last reply 21 Jan 2023 09:03

Update on ADP, PIP and MRI.

Hey everyone..... I just wanted to update you on this ever evolving story. (To save me typing it all out again have a wee read of my 14th December post). Adult Disability Payment have now awarded me enhanced care on both daily living and mobility. It has been a 6 month process but it was so worth...

8

@Scheb

15 Jan 2023 22:35Last reply 15 Jan 2023 23:06

Sorry long post

So sorry this is going to be a long post but just wanted to offload on what has happened since Tuesday/Wednesday of this week. I know everyone’s experiences and symptoms are different but I wondered if anyone has experienced what’s happening at the moment. On Tuesday I got the results of my neck...

1

@Alex_Bolland

12 May 2022 10:10Last reply 22 Dec 2022 21:17

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.

3

@Ireneb74

14 Dec 2022 20:16Last reply 15 Dec 2022 15:19

I love my fiance!!!

I am such a lucky lady!!! If u read my last post you will see that PIP decided I don't need my car any more even though I walk with a stick, ankle braces and ankle straps. I was diagnosed with Primary Progressive Multiple Sclerosis in February this year. I wrote to PIP to disclose my Change of Ci...

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