Do the medics etc really understand PPMS?

Primary progressive MS
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I was diagnosed with PPMS 2016, i just got on with it, neurologist didnt really know much about it when i first went to him 2007 so that is why it took so long as i didnt match the MacDonald criteria.

PPMS is supposed to be slow progressive we never really have remmissions. I just carried on with it and coped as well as i could.

towards the beginning of this year i was taken into hospital (about six months ago) with a suspected stroke. it turned out i had new active lesions on my T10 and T11. iN A WAY oddly it made me feel better as i had convinced myself i didnt have MS lol.

WELL anyway things are worsening for me now. I see nurse and i have had CBT and also just had a pschlogy meeting twice, which seriously didnt help.

I was told to read up about handling fatigue in PPMS through MS society. my fatigue is off the charts i feel vile all the time, and can barely function now to do anything. There on the article is a nice man explaining how his RRMS effects his fatigue.

Talk about going to meetings as well and xmas meals on the newsletter i have just received.

I WISH. Seriously i am HOUSEBOUND, do i want to be NO. But i am exhausted, in pain everyday so bad i could scream. If i try to go out, on my wheelchair with my care worker the effort is killing for days, i am exhausted for days if i have a shower. my legs, bowel and bladder are affected, this could be down to the new lesions.

the pychologist thought as i have such a sharp brain, i could be doing things, going on line course, meeting people, perhaps i should, but my life for me and my safe place is my home.

Can the MS Society not do a survey on PPMS and how it affects us? or am i just abnormal. I try everyday to walk a bit in my tiny house and i will not stay in bed all day i DO GET up, I AM tired, pain. Just having family for an hour wipes me out for days.

do i want to be like this hell now. I am 74 years old.

i am extremely healthy otherwise and keep a good weight.

is there anything you having PPMS can advice?

Just would like to chat about RRMS versus PPMS. there is a huge difference surely?

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So many different flavours of MS - it affects everyone differently. And so many different personal circumstances and mental attitudes to having the disease.

As a group, we need to be tough on the freeloaders! Yes, really. There are people within our society who don’t want to work and see a life of welfare as a valid lifestyle choice. It’s a political hot potato right now. Labour MP’s blocked changes to welfare eligibility, including PIP, even though as a nation we can’t afford £100Bn pa that the bill will be by 2029-30. Unfortunately some of the workshy will be taking advantage of their MS diagnosis…

Most of us are fighting the disease with every ounce of effort, trying to live as normally as possible as it gets harder. Some are fortunate that they may have a diagnosis but their symptoms are benign. Most are somewhere in between and all are worsening.

No, many medics don’t really understand MS. Think of the millions of conditions that can afflict humans - it’s not possible to be expert on all of them. Some medics can fall victim to sufferers “talking up” their symptoms and lack the expertise or time to properly query the experiences.

For those of us who are honest about the challenges we face, we need to be tough and possibly a little suspicious of people trying to game the system. Our own credibility depends on it.

MS is a tricky one for Gov & Benefits because of the RR- nature. It’s nigh-on impossible to accurately assess duration or severity of a relapse, so currently the treatment of RRMS sufferers errs on the unfair.

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not sure what all that has to do with my post. I am talking about MS medics who dont appear to know the difference who send us to experts like pscholgoists who work alongside people WITH MS. The trouble is they have no idea there are 2 distincts MS, RRMS and PPMS, both of them are DIFFERENT.

As to workshy well i am 74 as to PIP the goverment and others have made a huge mistake with PIP, they added MENTAL HEALTH into it. THAT IS WHY THERE IS A PROBLEM with PIP now, as the majority of people now on it have mental health issues, not genuine disabilities which it used to be for. I mean why does someoe with mental health need a MOBILITY CAR? the word mobility says it all.

most people with mental health i know who are genuine, are younger and their parents are putting them forward as having autisim or ADHD etc, most mental health like my grandson lives quietly off grid with his mother and wont go out into the world. but he is rare.

the government should never had added mental health into PIP, should have perhaps designed another benefit for people which included support in it to help them get back to work, oh yeh isnt that called ESA and universal credit.

I HAVE PPMS, i do not have remissions mine is ongoing. someone with RRMS may have remissions and be able to live a life for someone then go crash down for months even years.

I am in ACUTE ACTIVITY now, which is last stages i suppose. I do get PIP it will be up for renewal in another year. if i am still here by then. mine pays for my care.

I THINK the waay the government should do it is; you are diagnosed officially with either RRMS YOU should automatically get PIP. your never going to recover.

I just want the MS departments to get a grip.

I dont see why medics in hospitals cant have an understanding of basic illnessesss like MS which will be different each time.

i have had this since 2000, and feel i have done well. but now i have had enough and fed up of being lumped into the same with everyone else. I have mental health issues due to my MS.

I DONT WANT to go to a xmas party i cant even get off my chair.

HOW DO YOU DEFINE FREELOADERS?

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Yes, apologies for the thread drift :blush:

In talking about freeloaders, I’m talking about people of working age who have invoked a health issue as a means of receiving benefits, either as an extra wage or as an alternative to a wage. Statistically these people exist: there are 1 million more people of working age who are now economically inactive compared to 5 years ago. Some will be genuine, deserving cases, some will not. Many have been diagnosed over the phone, claiming to have anxiety, depression or some other mental health issues. The structural issue we have is that once someone gets onto EESA, they are effectively taken out of the loop: no need to even look for work. This is a hangover from covid / lockdown etc. (and hence previous Gov) and many people have seen that with the cumulative effects of benefits, they cannot afford to go back to work. How do you take benefits off someone who has become used to them arriving every couple of weeks and doing nothing in return? Politically, the Labour back-benchers rebelled against Starmer & Reeves’ proposed cuts, so the leaders backed down and UK taxpayers are left paying the bills again.

As for blanket PIP payments on diagnosis for RRMS (or any other MS for that matter), I disagree fundamentally with you. Benefits must be paid out based on the lifestyle effect of their symptoms. Some have no symptoms or relapses held at bay by effective DMT. When/if they worsen, they can be reassessed. How can someone with no symptoms or relapsing 10% of the time be considered the same as someone relapsing 50% or the time, or with progression?

Every individual must be judged on their merits.

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we will leave it at that, it just doesnt answer my original post which was important to me.

have a lovely day i am PPMS i thought you were, i NEVER GET A REMISSION, when it started it never STOPPED, and is now so bad i can barely walk. even you dont seem to know the difference between RRMS and PPMS sadly.
so anyone with PPMS will just go down even if its a slow progression, they never get a break.

PPMS stands for Primary Progressive Multiple Sclerosis, which is a form of multiple sclerosis (MS) that is characterized by a steady, gradual worsening of neurological symptoms from the beginning. Unlike other types of MS, there are typically no clear relapses or remissions. Instead, symptoms like walking difficulties, balance issues, and fatigue gradually accumulate over time

so from the get go i have been on a decline with NO remissions.

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As someone who was dx’d with PPMS 13 years ago, uses a wheelchair but still manages to hold down a job, I read this with interest.

My biggest frustration is that RRMS controls the dominant narrative. To the extent that anyone (mostly youngish sociable women who like to share) who experiences vision problems, pins&needles, pain, fatigue, brain fog etc. etc., will go around telling all and sundry that they think they ‘might’ have MS. And then 85-90% of folk ‘do’ actually have RRMS, so this is where all the ££funding and media interest lies; after all, a telegenic young mum with two adorable toddlers that’s all over social media will get vastly more attention and sympathy for her optic neuritis than the archetypal, older, ppms sufferer will for their wheelchair dependency.

Ref PIP, I’d recommend automatic award for PPMS and SPMS, but rigorous examination and in person assessments for RRMS folk making a claim.

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@Clucker_Pigeon2024 Love your characterising of the nascent MS-er’s who seem to treat MS as a lifestyle accessory. Like you, I’m a wheelchair-using PPMS-er.

Not quite with you for the blanket PIP award for Progressive MS. I was late-diagnosed so went straight to EDSS6.0 and got a PIP award based on my impairments. However, following misdiagnosis I was possibly PPMS for nearly a decade yet still held down a site-based, operational role up to and slightly beyond diagnosis. I would not have “deserved” PIP if my PPMS had been picked up much earlier.

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I think it’s difficult for anyone to understand. I have PPMS and at certain points have been wiped out for months. By that I mean bed bound, sipping water as a pain distraction method. The first time it happened went pretty dark as I thought PPMS never improves so this is me now, forever. However, I found out much later you still get active and non-active periods, stress was a factor too (I used think of stress being eh “made up” as used to just pushing through, obviously it very much is not).

Hardly understand my MS so at this point try to square it off internally with think “I’m glad they don’t understand, they would need to have it to and wouldn’t wish it on anyone”.

It’s very frustrating, basically house bound so no-one sees either. If they see you when you’re going to the max (which wipes you and I out for days) they go “you were fine yesterday” is the most infuriating comment or actually if they “know someone/people with MS and they’re not like that”. 1) Likely not PPMS 2) It changes even with environment/stress. 3) The years long carousel of trying drugs for pain and their side effects (and all the organisation around getting them, taking them reading up on them and generally having no idea why your body is reacting strangely) and DMTs (lucky on ocrevus however catch everything for longer, last job I lost as was done for over a month just in bed was WFH and a contractor so obviously let go, was crawling to my chair before that).

Do agree, a survey would be a good idea.

For me I try to do what I can and I’m only now accepting that (kinda still push it).

It’s not a dig at anyone (at all, please don’t take it that way) but I’d personally be exceptionally cautions of calling anyone freeloaders (especially as a generalisation) which includes mental health issues. Also their aren’t many employers who are ok with constant absences, sometimes upto a month even if sometimes fine working even not WFH (which are even harder to get).

Similar to our situation we don’t have it so don’t understand (my case definitely did go fairly dark into depression and it’s not made up) in a way it would be like someone going to one of us “you don’t look like you’re in pain” that’ll be as you can’t see it.

I find just achieving one thing even if that’s a small thing and the house is a total mess (live alone now) then it drives me maybe to do 2 the next day and so on. You see a bit of progress. I think it’s important to be kind to yourself (I’ve definitely been very bad at that).

I did a pain course via only a short maybe hour call with other people on it which made so much sence. Basically never go to 100% (I’m stubborn so ruin myself for days and days after). (removed by moderator)

All of us on the call were just “Ohhh that makes sense”, that was chronic pain. MS is incredibly complex so I think being kind to yourself and also though even if you’ve explained over and over to various people what it’s like they’ll never understand it, don’t really understand my own though have read 1000’s of things courses etc.

Sorry if not helpful but just ask and I’ll try to answer as well as I understand it.

Best wishes everyone,
Andrew

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