#primary-progressive

@2012ashleigh

21 Sep 2022 10:06

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?

@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

@lizelliott

14 Jan 2019 07:07Last reply 9 Mar 2022 16:08

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...

11

@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

@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

@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

@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

@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

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

6 Sep 2022 13:50 EditedLast reply 20 Sep 2022 22:03

Story time - PIP & PPMS

Sitting comfortably ??? Then I will begin... In 2019 I was awarded Enhanced Mobility PIP, I had quite bad mobility issues. With that award I got a Motability Car. Life was good :-) In 2021 my GP tried to increase my pain medication - I refused as wanted to know why I was in so much pain. I wa...

4

@lmt4

7 Sep 2022 12:14 Edited

Shift in my world!

Hi everyone! I am a new member and I look forward to making connections here. I have been diagnosed with Primary Progressive MS just over a year ago. I used to work as a Dental Hygienist (DH) and a DH educator with a college downtown. Since my diagnosis I have noticed an increase lack of balance and...

@shiftms-blogs

1 Sep 2022 14:39Last reply 1 Sep 2022 14:44

"Don’t just let the disease take you down."

NEW MS BLOG | "Get Better: Find your MS Hierarchy of Needs" by @HackMyMS Improving function starts with identifying lifestyle factors that affect your symptoms. Kristin Hardy, HackMyMS. Want to improve your function? Start by figuring out MS hierarchy of needs. No, not binge watching Killing Ev...

8

@NASCARprof

25 Aug 2022 17:25Last reply 25 Aug 2022 19:45

I started with....

Foot drop. More than a decade before I was diagnosed with Primary Progressive MS, I experienced weakness in my right foot that caused it to drop whenever I walked for any distance. It quickly advanced to where my toes would "grab" on carpet or pavement and I'd crash to the ground. I eventually learn...

3

@HeidiHelps

14 Aug 2022 20:07Last reply 16 Aug 2022 18:11

MS Emotional Help

I've been living with Primary Progressive MS since 2004. It's no picnic, that's for sure. Luckily my mental faculties haven't been negatively affected and I was able to go back to school and get my Masters Degree in Counselling Psychology. I'm a trauma counsellor who helps people living with MS and ...

Kamloops, Canada

8

@Julietk

13 Aug 2022 19:35

Just joining

Just a short hello to everyone I have had ms for 14 years and just progressed to primary progressive bit shit coz I feel rely crap just had a course of steroids and due to start Tyas right,much love to everyone xx

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