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I'm going to SCREAM...!!!!!!!!

To whole effing world; My MS does NOT, I REPEAT NOT!!! “come and go”.

Relocated recently and am, weekly, getting comments from half-wits who “know about someone with ms” whose symptoms just, grrrr alert again!!!, “come and go” (can’t find roll eyes ffs giph, as would be adding about ten of them now…)

Seriously though; can’t we just take the MS out of PPMS? Just call it PPND (neurological disease) or something. Might stop the half-wits saying things like; ‘oooo, I’ve heard about that, stay positive and you might find you’re OK to go running soon’…

My head needs to find a brick wall to knock down.

(Apologies for rant: hope you’re all OK. Haven’t been here for a while due to serious life-changing move).

Take care, CP

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Hi CP, you rant away, if that`s what you need.

Yeah, people without MS seem to always know someone who does and Oh yes, so and so has MS and can do X Y and chuffin Z

We need a way of replying without insulting them or ourselves!

pollsx

Think i will join you in a good scream.I get fed up of people saying ‘im sure you would feel better if you got out more’ sick of silly comments from people who clearly dont have a clue.Hope you settle in quickly in your new place.Its so stressful moving.

J x

Oh CP.

It’s just another irritation in the land of endless irritation. I get certain people asking “How are you?” as if one day I’m going to say: “Do you know what? I’m cured.” Then I get accused of being negative when I tell them the truth. "Still disabled.!

Anyway, you know you can rant on here without any problems.

Best wishes, Steve

Yeah I know people are shit but I was probably the same before this awful illness kicked in. I don’t know why people have to say unhelpful comments, probably don’t know what to say and it’s the first thing that comes to mind.

The gp is just as bad, practically begged for a referral to get something done about my footdrop. I got my referral and she said life must be challeging. I’ll say!! The surgery had a carpet all the way from the waiting room to the Drs room. I can’t get my left foot off the ground at all any more. I was so exhausted but the time I got there I could hardly speak.

I get it CP.

Mags xx

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Hi CP

Can I scream with you please? I am sick to the back teeth of irritating comments like get out more, exercise more and the like.

We are all with you and understand, you vent as much as you need.

Pam x

Hi CP, rant away, PP is bad enough & it gets worse. It’s best to just get the dim wits out of your life. They cause most the problems, in the first place. There’s quite a few healthy people I know, playing the system. They get jealous of folks with genuine problems & they try to twist it to their favour. It’s happening a lot, with folks of late. I trust nobody these days. It’s a racist free for all. They want the dark ages one minute & technology the next. Scitsophrenic losers. Try to stay calm & keep away from idiots, they’re too caught up in their lies. Take care & be yourself.

It is so frustrating, I’m with you on that totally, I still remember at mt 1st PIP assessment, the lady asked me three times how I felt on a good day? I could have screamed!!

Sonia x

Perhaps we should go down the Brats Blog path and say we have “advanced MS” instead.

Deliberate mis-spelling!

Jo x

I just hate it when I’m having a bad day and someone tells me about someone with other problems and says "be glad you are not like poor so and so…it makes me feel terrible and so hurt particularly if it’s a family member or friend. Why do they come out with comments like that and think that I will feel so much better. Michelle and Frazer xx

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This must be one of the most counter productive things to say ever.

And have you ever noticed, the people who say things like “oh, you’re not as badly off as so-and-so” - are usually much better off than you!!!

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every day is a good day - but I still feel like sh!t… Mick

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I was asked once, by someone that really should have known better ‘can you catch MS?’ implying that I could pass it on. My reply was simply ‘yes’ (I know, I was being a bitch), the look of horror on their face shut them up, needless to say said d******d is no longer in my circle of ‘friends’. I would love to have been the Dr that told them the truth, just to see their reaction.

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That’s funny Tracy you had me laughing, I bet they were terrified, I’d have coughed on them too. I always felt tempted to tell people that my daughter’s autism was catching, it always made me sad when they’d stare at her. Michelle and Frazer xx

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I agree, ignorant idiots can just do one! MS doesn’t helps our patience for sure

Sonia x

Tempting, Tracey, tempting

Rant away you make me feel human, yes like you I have been getting the usual crap even recently from sister who said you looked after yourself all your days I drink like a fish and I am fine, but as I said to brother she is also from the same jean pool and a heavy drinker she is also massively overweight both will tell in time but yes it still hurt when she said it so yes thanks for making me realise I am not the only one take care

Amen, brothers and sisters! Screaming in frustration along with you all here. However- we had a couple of friends round to tea this evening prior to takng Ruth out for her weekly night off putting me to bed, and when I made it clear I was feeling like s**t Phil said “Poor Kev, not having a good day” and was quiet, kind and considerate allthe time he was here. He’s not noted for his empathy and for being quiet. So you see, some people get it. Love Kev

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Aug 31, 2017 Hi, i’m new to this society. I think I’ve had primary progressive MS since about the year 2000 I was 40, just after getting Lyme disease which is supposed to be gone. 56 years old now. I was not diagnosed until Summer of 2014 after some MRIs. It started with pain in my right hip while walking on the golf course pain is gone but my right leg is weak it feels like I have a 3 pound weight on my ankle. I went to a lot of neurologist some specialists and came up With nothing. Nothing but tests or do you want to be part of the study which half people get a placebo I said no thanks they say there’s no cure for primary progressive MS and it slowly gets worse. I’m Not half as bad as many of you but lately I’ve been having a hard time functioning and working. I still run a business and travel 12 to 14 times a year somehow I get through it luckily I have a job where does not require me to show up at work every day it’s my own business so in a lot of ways and very lucky compared to a lot of you. I have trouble sleeping almost every day, I’ve tried Clonopin, Trazodone, Requip just two days ago, it really helped first day second day no help at all. I think it’s more than RLS, I feel stressed thinking, worrying a lot how I will continue to live and work in the future. I can get around the house cook clean around the house takes me a lot longer than used to. I can drive. Every thing I do takes much more effort but I can get a lot done. Last few years I’ve been feeling more sick to my stomach a lot but I never really get sick and throw up or anything. I’ll get a light headache and it never gets too bad. I often feel like I’m on the verge of collapsing going to be taken to the hospital but it never happens. Resting for 15 minutes helps. On top of all this my girlfriend of 10 years passed away last year from lung cancer, she moved to my house under hospice for two years. I watched her die oct 28, 2016. I miss her immensely and will never get over that. I’m depressed in account of that. I don’t smoke and tried like hell to get her to stop. My joy is my mom, my chihuahua and playing music. I feel better when I’m occupied until I just have to lie down. I’m waiting for an amazing cure before I die or wind up in a wheelchair in some facility.

Hi Mikee

Welcome to the club that no one would choose to join, but we are here and it is what it is, and there are lovely people here, always willing to listen and offer advice when they can.

I am sorry to hear about the loss of your girlfriend, that in itself is obviously making you feel low and depressed, without having ppms. Would it help to speak to your GP about having some counselling or a course of anti depressants? Both of this can be a godsend and really can help, might be worth giving it some thought.

Its good you are close to your Mum and I expect your little dog gives you so much pleasure, I know mine does, he is an 8 year old mini Yorkie, and is a very special friend to me.

Look forward to seeing you on the forum, take care.

Pam x