# \#primary-progressive-MS **URL:** https://forum.mssociety.org.uk/tag/primary-progressive-ms/10.md [Latest](https://forum.mssociety.org.uk/latest.md) · [Categories](https://forum.mssociety.org.uk/categories.md) · [Tags](https://forum.mssociety.org.uk/tags.md) --- ## [Any hope left for me with PPMS?](https://forum.mssociety.org.uk/t/any-hope-left-for-me-with-ppms/79759)
**Author:** [@Giova](https://forum.mssociety.org.uk/u/Giova)\ **Replies:** 29\ **Last updated:** [22 October 2026 06:15 UTC](https://forum.mssociety.org.uk/t/any-hope-left-for-me-with-ppms/79759 "2026-10-22T06:15:51Z")
Just wondering if there is any hope for me left as I continue to live with my PPMS? I’m now 64 and have been asking for AHSCT since diagnosis in 2017 with no luck. I have tried for some time to get onto the current HSCT … --- ## [Newly diagnosed 37F with possible PPMS and new baby](https://forum.mssociety.org.uk/t/newly-diagnosed-37f-with-possible-ppms-and-new-baby/81602)
**Author:** [@bluebird](https://forum.mssociety.org.uk/u/bluebird)\ **Replies:** 11\ **Last updated:** [22 September 2026 08:37 UTC](https://forum.mssociety.org.uk/t/newly-diagnosed-37f-with-possible-ppms-and-new-baby/81602 "2026-09-22T08:37:45Z")
Hi everyone, Hope you are all well and enjoying the summer. Reading posts on this forum has brought me a lot of comfort this year. I’ve had a very tough time with my diagnosis at the moment and am hoping to find some so… --- ## [Loss of driving licence.](https://forum.mssociety.org.uk/t/loss-of-driving-licence/81658)
**Author:** [@Netty58](https://forum.mssociety.org.uk/u/Netty58)\ **Replies:** 4\ **Last updated:** [27 August 2026 12:22 UTC](https://forum.mssociety.org.uk/t/loss-of-driving-licence/81658 "2026-08-27T12:22:48Z")
Hi everyone.. just posting on here to see if anyone has been through the same problem, .. the DVLA have taken away my driving licence, I was maybe a bit too honest when filling out the form to renew my 3 year licence. Fo… --- ## [Ageism](https://forum.mssociety.org.uk/t/ageism/81034)
**Author:** [@Giova](https://forum.mssociety.org.uk/u/Giova)\ **Replies:** 10\ **Last updated:** [5 July 2026 12:01 UTC](https://forum.mssociety.org.uk/t/ageism/81034 "2026-07-05T12:01:55Z")
Why is there so much ageism prevalent in most things to do with MS? Too old for treatment, too old for trials, too old to expect new drugs and so forth. PPMS is already deeply overlooked so combined with ageism it’s like… --- ## [Progressive Solitary Scleriosis](https://forum.mssociety.org.uk/t/progressive-solitary-scleriosis/74859)
**Author:** [@Daunieo](https://forum.mssociety.org.uk/u/Daunieo)\ **Replies:** 22\ **Last updated:** [12 June 2026 13:12 UTC](https://forum.mssociety.org.uk/t/progressive-solitary-scleriosis/74859 "2026-06-12T13:12:54Z")
Hello all, I know this thread doesn’t quite match my diagnosis and im in a rare sub set of the MS family tree. But honestly this is the closest I can get to any support. There’s no patient information leaflet for me or… --- ## [Caring for parent with MS - fall ](https://forum.mssociety.org.uk/t/caring-for-parent-with-ms-fall/81281)
**Author:** [@jessicajefferyyy93](https://forum.mssociety.org.uk/u/jessicajefferyyy93)\ **Replies:** 0\ **Last updated:** [2 June 2026 17:38 UTC](https://forum.mssociety.org.uk/t/caring-for-parent-with-ms-fall/81281 "2026-06-02T17:38:19Z")
Hello, I’m new to this forum. Im seeking some advice and support and thought id give this a try. My Dad has PPMS, he’s had it for quite a few years. I’m seeking out some advice on at home callout alarms, and organisati… --- ## [Urology Assessment](https://forum.mssociety.org.uk/t/urology-assessment/80891)
**Author:** [@airdrop-geckos.4d](https://forum.mssociety.org.uk/u/airdrop-geckos.4d)\ **Replies:** 11\ **Last updated:** [26 February 2026 12:46 UTC](https://forum.mssociety.org.uk/t/urology-assessment/80891 "2026-02-26T12:46:52Z")
Hello, I have a urology appointment tomorrow and not sure what to expect - I was referred as I’m finding I’m having to go to the loo more and more often and usually don’t fully empty so have to go straight back - an in… --- ## [Diagnosed yesterday (04/11/25)](https://forum.mssociety.org.uk/t/diagnosed-yesterday-04-11-25/80441)
**Author:** [@jenny.tootell](https://forum.mssociety.org.uk/u/jenny.tootell)\ **Replies:** 5\ **Last updated:** [11 November 2025 10:50 UTC](https://forum.mssociety.org.uk/t/diagnosed-yesterday-04-11-25/80441 "2025-11-11T10:50:20Z")
So I was diagnosed yesterday with Primary Progressive MS. I am neuro divergent - I have Autistic Spectrum and ADHD, I also have Graves disease and MoDY (Mature onset Diabetes Young). Thought it would be a good idea to… --- ## [Mum's ms worsening, worried](https://forum.mssociety.org.uk/t/mums-ms-worsening-worried/78829)
**Author:** [@TooBlue](https://forum.mssociety.org.uk/u/TooBlue)\ **Replies:** 10\ **Last updated:** [20 July 2025 08:54 UTC](https://forum.mssociety.org.uk/t/mums-ms-worsening-worried/78829 "2025-07-20T08:54:33Z")
Hi My Mum has primary progressive ms. She has carers 4 times a day and she’s 64. I used to be in denial that her health would get any worse, I told myself that happens other people, but Mum wouldn’t be like that. Unfor… --- ## [Hello again ...](https://forum.mssociety.org.uk/t/hello-again/78766)
**Author:** [@Stefos301](https://forum.mssociety.org.uk/u/Stefos301)\ **Replies:** 5\ **Last updated:** [7 March 2025 19:42 UTC](https://forum.mssociety.org.uk/t/hello-again/78766 "2025-03-07T19:42:39Z")
Hi, I’ve been trying to compile a post without ending up crashing or losing my way ! You see I am using ’ Smart box ’ assisted software which I can control using my eyes.It works well and it’s really just my ability… --- ## [I'm scared and need support please.](https://forum.mssociety.org.uk/t/im-scared-and-need-support-please/78634)
**Author:** [@imissfeelingokay](https://forum.mssociety.org.uk/u/imissfeelingokay)\ **Replies:** 5\ **Last updated:** [25 February 2025 23:04 UTC](https://forum.mssociety.org.uk/t/im-scared-and-need-support-please/78634 "2025-02-25T23:04:16Z")
Hi all, I had to take time away from most of the internet since it wasn’t helping me to spiral down MS related rabbit holes. However, I’m not sure what else to do at this point. This is a pity party post, and I apologiz… --- ## [Are MS Holidays still available?](https://forum.mssociety.org.uk/t/are-ms-holidays-still-available/76978)
**Author:** [@LizzieBeth](https://forum.mssociety.org.uk/u/LizzieBeth)\ **Replies:** 1\ **Last updated:** [14 October 2024 17:47 UTC](https://forum.mssociety.org.uk/t/are-ms-holidays-still-available/76978 "2024-10-14T17:47:22Z")
Anyone know if the M.S breaks are still available? I’m trying to find out if the various regions/areas still provide these mini breaks or if, like most things, this has had to stop. In the past I’ve attended two Mon-Fr… --- ## [I just want to be okay again.](https://forum.mssociety.org.uk/t/i-just-want-to-be-okay-again/76520)
**Author:** [@imissfeelingokay](https://forum.mssociety.org.uk/u/imissfeelingokay)\ **Replies:** 12\ **Last updated:** [16 July 2024 13:25 UTC](https://forum.mssociety.org.uk/t/i-just-want-to-be-okay-again/76520 "2024-07-16T13:25:48Z")
Hi everyone, I’ve lurked on these forums for the last few months, but today I decided to reach out for the first time. I have a lot on my chest, so I apologize for the novel this is going to become. I just don’t know ho… --- ## [Recently diagnosed with PPMS / Feeling positive and focused](https://forum.mssociety.org.uk/t/recently-diagnosed-with-ppms-feeling-positive-and-focused/75709)
**Author:** [@phillypmda](https://forum.mssociety.org.uk/u/phillypmda)\ **Replies:** 2\ **Last updated:** [13 May 2024 16:28 UTC](https://forum.mssociety.org.uk/t/recently-diagnosed-with-ppms-feeling-positive-and-focused/75709 "2024-05-13T16:28:11Z")
Hello all New to this, saying hi and not sure what lies ahead. I now eat well, do some light daily exercise and remain focused. :sunrise\_over\_mountains: --- ## [MS and Table Tennis](https://forum.mssociety.org.uk/t/ms-and-table-tennis/75204)
**Author:** [@mike1](https://forum.mssociety.org.uk/u/mike1)\ **Replies:** 0\ **Last updated:** [24 March 2024 09:51 UTC](https://forum.mssociety.org.uk/t/ms-and-table-tennis/75204 "2024-03-24T09:51:46Z")
Hi everyone, I am new to the forum. I am 68 and about a year ago I was diagnosed with PPMS, which with hindsight I may have had for circa 10 years. Obviously not happy with the diagnosis but it did make sense of my lon… --- ## [doctors dont listen, scared im only gonna get help through a trip to a&e](https://forum.mssociety.org.uk/t/doctors-dont-listen-scared-im-only-gonna-get-help-through-a-trip-to-a-e/66616)
**Author:** [@clutter](https://forum.mssociety.org.uk/u/clutter)\ **Replies:** 7\ **Last updated:** [12 June 2023 10:01 UTC](https://forum.mssociety.org.uk/t/doctors-dont-listen-scared-im-only-gonna-get-help-through-a-trip-to-a-e/66616 "2023-06-12T10:01:54Z")
hi im not comfortable saying my age but i’ve been having symptoms since i was around 11/puberty age, but they werent nearly as bad then. I’m in Scotland and i’ve been trying to get doctors to listen to me for years. They… --- ## [Lived experience](https://forum.mssociety.org.uk/t/lived-experience/73790)
**Author:** [@rupak](https://forum.mssociety.org.uk/u/rupak)\ **Replies:** 1\ **Last updated:** [17 November 2023 12:51 UTC](https://forum.mssociety.org.uk/t/lived-experience/73790 "2023-11-17T12:51:42Z")
In 2018, I found I was falling over a lot so I went to my GP who referred me to the Falls Clinic. They did an MRI scan and found lesions on my spine, which pointed to Multiple Sclerosis. At the time I had a successful c… --- ## [Exercise?](https://forum.mssociety.org.uk/t/exercise/38430)
**Author:** [@Inactive\_User](https://forum.mssociety.org.uk/u/Inactive_User)\ **Replies:** 30\ **Last updated:** [23 July 2023 15:52 UTC](https://forum.mssociety.org.uk/t/exercise/38430 "2023-07-23T15:52:29Z")
Hi all just wondering if your health care providers have ever suggested exercise recommendations or referred you for physio to help with mobility? My mother had Primary progressive MS and just wanted to see if exercise … --- ## [Stair climbing with a walking stick](https://forum.mssociety.org.uk/t/stair-climbing-with-a-walking-stick/72448)
**Author:** [@AFOdriver](https://forum.mssociety.org.uk/u/AFOdriver)\ **Replies:** 13\ **Last updated:** [27 June 2023 11:34 UTC](https://forum.mssociety.org.uk/t/stair-climbing-with-a-walking-stick/72448 "2023-06-27T11:34:43Z")
Firstly Hello everyone, Only read this if your brave and stupid like me :crazy\_face: I’ll try to explain how i manage up my stairs, i can’t carry the shopping, unless it’s in a rucksack. Well here goes my stair climbi… --- ## [Is it worth bringing up the possibility of PPMS to my neurologist?](https://forum.mssociety.org.uk/t/is-it-worth-bringing-up-the-possibility-of-ppms-to-my-neurologist/72469)
**Author:** [@kimmykim](https://forum.mssociety.org.uk/u/kimmykim)\ **Replies:** 3\ **Last updated:** [22 June 2023 22:23 UTC](https://forum.mssociety.org.uk/t/is-it-worth-bringing-up-the-possibility-of-ppms-to-my-neurologist/72469 "2023-06-22T22:23:21Z")
Hi everyone! I’m a 25 year old female and have been struggling with symptoms for a while now. Whilst I was on holiday in 2018, I suddenly felt a tight, stiff, cramping pain in both calves. I now suspect this to be spasti… --- ## [Confusion & Aphasia after infection](https://forum.mssociety.org.uk/t/confusion-aphasia-after-infection/71856)
**Author:** [@bemusedpuma](https://forum.mssociety.org.uk/u/bemusedpuma)\ **Replies:** 0\ **Last updated:** [2 May 2023 20:38 UTC](https://forum.mssociety.org.uk/t/confusion-aphasia-after-infection/71856 "2023-05-02T20:38:37Z")
Hi, I care for my partner who has PPMS and is advancing rapidly since his diagnosis only a few years ago. He is now in a wheelchair with limited use of his arms and hands. Since his diagnosis he has had a serious blood… --- ## [Treatment or physio ideas for trouble typing](https://forum.mssociety.org.uk/t/treatment-or-physio-ideas-for-trouble-typing/71355)
**Author:** [@TeaPotGC](https://forum.mssociety.org.uk/u/TeaPotGC)\ **Replies:** 1\ **Last updated:** [21 March 2023 12:58 UTC](https://forum.mssociety.org.uk/t/treatment-or-physio-ideas-for-trouble-typing/71355 "2023-03-21T12:58:09Z")
Looking for ways to keep working but need to type and write which is increasingly painful and difficult due to numbness in hands especially right one and right shoulder arm and hand pain. Should I see a physio? Can I wea… --- ## [Care Homes](https://forum.mssociety.org.uk/t/care-homes/68577)
**Author:** [@jon72](https://forum.mssociety.org.uk/u/jon72)\ **Replies:** 2\ **Last updated:** [23 July 2022 09:09 UTC](https://forum.mssociety.org.uk/t/care-homes/68577 "2022-07-23T09:09:02Z")
Hi there - Say here at 10.45pm.awaiting an ambulance for the past 6hrs as the carers came to assess my brother this afternoon and concluded they can no longer provide care for Ian at home duevto his immobility. Collectiv… --- ## [When to become full-time Carer?](https://forum.mssociety.org.uk/t/when-to-become-full-time-carer/65780)
**Author:** [@Silver1](https://forum.mssociety.org.uk/u/Silver1)\ **Replies:** 10\ **Last updated:** [27 June 2022 20:31 UTC](https://forum.mssociety.org.uk/t/when-to-become-full-time-carer/65780 "2022-06-27T20:31:46Z")
New to these forums, looking for advice from other Partners about cutting down hours / giving up work and anything I should consider. My Partner has recently been diagnosed with PPMS following a year of significant decl… --- ## [Is it progressive?](https://forum.mssociety.org.uk/t/is-it-progressive/65875)
**Author:** [@Ani](https://forum.mssociety.org.uk/u/Ani)\ **Replies:** 4\ **Last updated:** [8 December 2021 05:36 UTC](https://forum.mssociety.org.uk/t/is-it-progressive/65875 "2021-12-08T05:36:18Z")
I was diagnosed with RRMS 3 months ago, after being misdiagnosed a few years ago. For a few years now I’ve had headaches and neuropathic pain, had a flare 3 months ago and went from long distance running to a EDS of 6. … --- ## [Emotional pain from PPMS onslaught on partner](https://forum.mssociety.org.uk/t/emotional-pain-from-ppms-onslaught-on-partner/39119)
**Author:** [@Joe](https://forum.mssociety.org.uk/u/Joe)\ **Replies:** 14\ **Last updated:** [5 October 2021 18:31 UTC](https://forum.mssociety.org.uk/t/emotional-pain-from-ppms-onslaught-on-partner/39119 "2021-10-05T18:31:04Z")
Good morning everyone! I am new to the forum and excited to know that there is this platform available to be with other MS carers. It is so easy and subtle to end up with a lonely and very challenging role as a MS carer,… --- ## [Can I ask your opinion](https://forum.mssociety.org.uk/t/can-i-ask-your-opinion/64391)
**Author:** [@Jenny1](https://forum.mssociety.org.uk/u/Jenny1)\ **Replies:** 3\ **Last updated:** [19 September 2021 21:02 UTC](https://forum.mssociety.org.uk/t/can-i-ask-your-opinion/64391 "2021-09-19T21:02:58Z")
Hello! I still don’t know my diagnosis but trying to resolve this mystery so that’s why I am here. My story began in the end of May. I was sick with coronavirus in the begging of May. After couple of weeks I had Bell’s … --- ## [Twins and MS (will we both get PPMS or RRMS}](https://forum.mssociety.org.uk/t/twins-and-ms-will-we-both-get-ppms-or-rrms/64590)
**Author:** [@UKDad](https://forum.mssociety.org.uk/u/UKDad)\ **Replies:** 1\ **Last updated:** [3 September 2021 20:32 UTC](https://forum.mssociety.org.uk/t/twins-and-ms-will-we-both-get-ppms-or-rrms/64590 "2021-09-03T20:32:33Z")
Hi all, IV recently been diagnosed with MS… my identical twin is showing no symptoms or anything. IV been reading literature and it appears from a paper that there is. A 9-25% chance they could get it. Does anyone have… --- ## [Nerve Pain](https://forum.mssociety.org.uk/t/nerve-pain/62177)
**Author:** [@Esjay](https://forum.mssociety.org.uk/u/Esjay)\ **Replies:** 12\ **Last updated:** [19 July 2021 11:21 UTC](https://forum.mssociety.org.uk/t/nerve-pain/62177 "2021-07-19T11:21:02Z")
Hello, my partner was diagnosed with PPMS seven years ago in his forties. First symptom was problem with ankle that developed into foot drop and now he is also unable to use his hand on the same side. Over the years he h… --- ## [Hello everyone. A newly-diagnosed veteran here...](https://forum.mssociety.org.uk/t/hello-everyone-a-newly-diagnosed-veteran-here/63412)
**Author:** [@GCCK](https://forum.mssociety.org.uk/u/GCCK)\ **Replies:** 3\ **Last updated:** [23 June 2021 10:34 UTC](https://forum.mssociety.org.uk/t/hello-everyone-a-newly-diagnosed-veteran-here/63412 "2021-06-23T10:34:30Z")
I had my initial diagnosis back in Dec’20, confirmed in April/May’21 with consultant and high-contrast MRI. For the last 9 years, I have been mis-diagnosed with spinal stenosis (first they thought lumbar, then cervical)… [Next page](https://forum.mssociety.org.uk/tag/primary-progressive-ms/10.md?match_all_tags=true&page=1&tags%5B%5D=primary-progressive-MS)