RANT..be warned, I'm not in an 'each to their own' frame of mind..

Primary progressive MS
1

In the past week I have had yet more people I know tell me about a friend/relation of their friends who “also has MS”. On questioning further then, yep, they are a) female aged 30-40, b) have periods then they “are in bed all day” but others when “they’re doing triathalons and running their local am dram” and… drum roll please…c) they have RRMS…well I never.

And I’ve just been on the Everyday living section to consider posting about exercise, the one thing helping me keep depression at bay and vaguely mobile. I slammed my computer shut after reading about yet another lass in her late 30s early 40s who feels oh so hard done by because she “goes all numb” after running 7k cross country…life’s so tough, bless her!!! (Had MS since 1995v don’t you know, no doubt been “fine for years” then probably had some random “vision issue” about 2 years but nothing since feeling numb after running for 60 minutes.

I used to run marathons, played county level sport and taught PE for a living. I have not been able to run since 2007. I am not able to earn a living from my old job anymore.

TBH, I really do feel like PPMS needs a separate website/forum/charity/whatever from the relapse brigade.

Chalk/cheese etc. I feel I would have very little to say to a RRMS sufferer if I met them.

Rant over. Apologies, am having a bad one. Have no one to identify with.

2

I agree that PPMS people don’t have that much in common with those suffering with RRMS, even though it’s all under the same disease umbrella. never having a good day is crap, every day is bad and I’m in imminent danger of having to give up the job I love too!

3

Lol I have an acquaintance who was wheelchair bound for a couple of years yet now runs plays golf etc and all I get is look at him he has got MS maybe you will be able to walk again one day. Grrrrr I have been in decline for 20 year he was knocked for six then got up and carried on with his life. People cannot comprehend the vast difference the here MS and say good days and bad days, I wish for a good day. I get bad days or very bad days sometimes even worse day’s

4

I understand your comments as my twin sister has RRMS but I do find that we have the same symptoms, just at different levels. She also has some symptoms that I haven’t got, (yet maybe). I look at it, she is taking the scenic route whereas I’m speeding down the motorway.

We aren’t compared because people who know us, know that we have different types of MS but it does annoy me when people comment on ‘‘someone they know with MS’’ who is ok etc etc. I’ve bitten a few heads off as they obviously don’t know them that well. Nobody with any level of MS is ok, you can just see some symptoms more than others.

I also get asked if I have good days and bad days and I also say ‘‘no, I have bad days and worse days’’.

5

Hi Clucker Pigeon, I understand where you’re coming from as some people with RRMS can go for years with very mild symptoms. However, others can be completely devastated by this disease. I have a friend with RRMS who can be much poorlier than I who has a myriad of symbols that I never experience. MS is such a varied disease but can devastate the lives of those with it regardless of which type they have. My friend is endlessly brave but often feels totally crap! She still keeps going every day though and is a massive inspiration! I I think we all have things that get us really down sometimes but there is always someone out there who has a tougher time. Keep your chin up, this disease is such a bugger but keep going as there is always someone who loves you and needs you. Teresa xx

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Symptoms not symbols! Duh!

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Wow if you feel that way about people diagnosed with RRMS, would hate to think how you feel about undiagnosed people…great! Thought this was a friendly website maybe not so…

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…it is a “rant”. Balance and reasonablness are not usually common features.

But I stand by whay I wrote in that I feel I have virtually nothing in common, ‘symptom’ wise, with the bulk of RRMS folk. And, yes, I’m just good olf fashioned jealous and bitter towards anyone with MS who is still able to run for pleasure; I’m only human, after all.

CP

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Whatever floats your boat

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I get the impression that people are at a loss as to what to say and try to thiink of something positive ie you will be OK soon …I know people who have the same and are fine. I bet a few years ago you didnt know that there were different types of MS.

My son was born with Down Syndrome and I used to do to Downs Syndrome group meetings for support. I had to stop going as it made me depressed as my son was so much slower than all the other kids. I went to a christmas party run by the association and left in tears after 5 minutes when I saw all the other kids playing appropriately with toys and having a good time. My wee lad was just in a complete world of his own with no speech and still in nappies at 8. It turned out he also had autism which is far worse than Downs. It still hurts when I hear how others with Downs have wee jobs, can take the bus and can stay at home safely on their own.

Whatever I have it is slowly getting worse. I have mentioned to people that it could end up being MS. I then get the stories … they now have a wee pill for that / or injections etc. If I do have MS I realy doubt that it is the RRMS type.

I read that post of all that running etc and it made me nauseous too. What you have to remember is that RRMS usually turns to SPMS eventually., usually before the age of 50. SPMS runs a course identical to PPMS really … but these poor soles have had symptoms since their 20s.

I think the ones that can do all that running are very few in numbers.

Take Care

Moyna xxx

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Further more younger people use this website including relatives of people diagnosed with whichever form of MS people may have and your ignorance does nothing to reassure anybody…rants are fine yes you are only human but I find your ‘rant’ ignorant and discriminatory…and unjustified NOBODY with MS has joined a BRIGADE no one including yourself has had a choice. But kicking people when they are down is uncalled for. No matter how much you are jealous or hurting inside other people are hurting too RRMS is a label, MS along with other illness are personal to the person. Just sad you feel the way you do maybe try add something into your day to help with your mood. If you want a separate website then create one that’d keep you busy!

12

Half of me is really relieved that I don’t ride the scary rollercoaster that MS can be for a lot of people with RRMS… BUT, I can identify with your rant Clucker. There is a certain panic that rises in me sometimes, when I realise I might never do something again (like never causing heads to turn when I walk by in heels, if they turn it’s cos they heard me trip!) or even be the same again. Sorry but my ego steps in here too, self-esteem just naffed off with my high heels.

In a social situation, just weeks after I was told likely PPMS, a slightly pushy foreign lady I know by acquaintance, told me quite straight that her daughter has MS too and I can be fine for YEARS at a time. I had to just gulp back what I wanted to scream out - I’m polite and given that she has a daughter with MS, I would certainly not have wanted to upset her either.

It felt pretty horrible though!

I suppose it’s one of those things you learn about as you go along - I didn’t know anything about MS, so found myself here when I was diagnosed. I knew MS was a serious illness and I don’t think I’ve ever offended anyone with MS because I never knowingly met anyone with MS!

My sister does have a close friend with MS, and RRMS naturally - so trying to explain PPMS to her was really painful, she was so outraged and angry that I didn’t get any treatment or DMDs. And a close friend with MS still didn’t mean she’s ever heard of, or known about PPMS. I’ve met 2 people with RRMS in the last few months and both said I was the first they’d ever met with PPMS (that’s still not 100% tho). One of them has SPMS and she said she had no idea how I was coping so well (I rescued her after she had a fall!) so I guess that we’re equally misunderstood?!

Manoon Manoon, I’m sure Clucker doesn’t mean to offend and I think it’s only natural to have an off moment/day - lets face it, we were having a long conversation in this thread in the last few days about the tears we’ve cried and the hours wasted doing just that.

On the whole, the crew in this section of the forum seem to do a pretty good job for each other, in trying to calm people’s anger, encourage each other to open up, provide a shoulder to cry on for each other, give advice on what we don’t understand, remind each other we’re not alone and have some friendly support, whether you’re having a good or a bad day!

Sonia xx

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I get mildly irritated when other people try to tell me about people they know who have MS and are fine with medication. They’re always slightly shocked when I point out that firstly, every patient’s MS is different, and secondly, there are different types of MS and there aren’t any treatments for the type I’ve got.

Yes, I get upset sometimes at the unfairness of life. Yes I’m mourning the loss of a few dreams and I get frustrated when I struggle with simple everyday tasks. Am I going to give in to this disease? Am I fairy cakes! I might have to live life at a slower pace than I used to, but I am determined to fulfil as many of my dreams as I can.

It would be easy to wallow in “why me?” and regrets at the things I’ll never do and occasionally I have a short spell of doing just that. But comparisons with other people don’t really help and on the whole I try to focus on what I can still do and the good things my life still holds - even if it’s something as simple as noticing a new flower coming out in the garden or enjoying the sunshine. My life has changed but it hasn’t ended.

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The more I read is that 99.9% of the research also goes into RRMS. Basically because there are more people and therefore more money the drug companies can make out of the treatment. I find that fact really annoying.

Also I get Cluckers point of view in that when people make these insensitive comments about people leaping from their wheelcchairs and running marathons they kind of make people like us feel that we are not doing enough to fight and overcome the bl-----fy illness.

I have read George Jenkle (sorry spelling) book on overcoming MS. Now he has had one ever so small attack, numb foot for a matter of days. On that with one small lesion got a DX of MS. He may only have benign MS but has managed to sell millions of books on his new diet etc. I cant help be a bit cynical etc especially as at first I followed his diet for 2 years and still declined - yet I suppose I have to remember it may not be MS for me.

Moyna xxx

15

CP I too understand where you’re coming from. Everyone knows someone either much better or much worse than me. I have also heard about drugs that helped so and so… It sometimes makes me angry or upset that they’re comparing me to other people and thinking I’m just looking for sympathy or attention. Yes my balance or pain levels are better on some days (good days) and really bad on others (bad days) but I never have days when I’m a normal healthy 44 year old woman any more.

I’m not looking for anyone’s pity, as Mitzi said, I’m living my life. It has changed but definitely isn’t over. I understand your need to rant and have similar conversations with my mirror as it understands better than anyone I know. That’s one of the things this forum is there for, only someone in the same boat with PPMS will understand and I think that’s why we have our own section within the forum.

I don’t really visit the other sections as some of those comments used to make me feel like much of my illness was in my head and my symptoms were just me being a wimp. But you were right when you said that by the age of 50 most people with rrms will be at similar stages with their symptoms and dx with spms so although we’re on a slide in the play park, they’re on a see saw but the damage will be done. I’m actually relieved that I wasn’t dx until recently as I got to do loads of things and go places without that hanging over me.

I’ve now got family and friends who know by watching me walk or seeing my face how I’m feeling that day and I don’t have to tell them. Anyone else is just happy with “I’m okay” or “today’s not great” as I don’t like saying anything more as I know that misery might love company but company runs from misery and I don’t want to isolate myself. I have hobbies and a good quality of life though much different from the one I envisioned. It’s definitely a case of “enjoy what I can do today and don’t dwell on what I can’t manage”.

Rant away, we do understand!! Get it all off your chest here so you don’t upset those who don’t.

Enjoy the sunshine and boost your vitamin D levels making the most of it.

Cath xx

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Hi CP

Rant away, we all do understand the frustrations and roller coaster of emotions this crappy illness brings, but I think whatever type of ms we have can cause diff7culties.

I am not 100% sure what m6 feelings are, I hhave learnt to understand my ms to a degree, but with rrms I think the not knowing of when, or if, another relapse is going to happen would be difficult.

For me to be able to cope, I found it easier to not dwell on what I cant do, but to enjoy the things I can, but some days it is really hard to do, but I do really try not to get angry with myself, as I feel its just a waste of precious energy.

Its good to have somewhere we can rant away to people who do understand, take care.

Pam x

17

Never mind it’s the description of a person that has posted that is being singled out which does not justify the ‘RANT’…sure If I wrote a similar worded ‘RANT’ singling someone out that has posted above it would be seen as unjust. If you are missing this point then that is really sad. Others have posted on the same ‘exercise’ thread so a more generalised overview would perhaps have been better or actually joining in with the thread itself and getting your views accross. Hey ho hope I don’t end up joining any BRIGADE! Just my humble opinion :slight_smile: have a lovely day all :slight_smile:

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Hi CP. We all have those days…and despite some bad reactions to your post WE with progressive MS do understand. You rant away to your hearts content …that’s why we are here for each other . Hope you are feeling a bit brighter now. Nina x

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Hi manoon, I’m sorry you are in limbo land…it’s an awful place to be…I remember it well. Please don’t be critical of CP…hopefully you will never be in his position but if you ever are maybe you will look back and be more more able to understand. In the meantime I hope your final dx is something that is curable. My very best wishes, Nina

20

Hi guys

Thanks for your support. My intention was never to insult, but rather underline the irritating issue all us PPMSers have to deal with vis a vis what seems like the whole world not recognising our illness for what it is.

Interestingly, when I last tried to explain PPMS to someone she said “Oh, isn’t that what Chris Woodhead has” (former Osted chair and pantomine villain for the teaching profession). This man actually has advanced motor neurone disease, but it did get me thinking.

And, yes, I’d willingly sign up for a life of optic neuritis and cognition problems if it meant I was able to run again.