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What medications do the PPMS club take?

I don’t ever bother going to my GP’s these days. Life has become far better.

The family doctor retired after diagnosing me with a headache.

I just wanted to know what medications other people with PPMS take & how long they’ve been prescribed.

With all the people diagnosed with PPMS out there, how come I’ve never met anyone else in person with PPMS? When I’m told there are so many others. People say I’m putting on an act when I can’t walk. I deny the diagnosis & the neurologist says I definitely have PPMS when showing me the proving MRi scans. I was told, I’ll be in a wheelchair & never drive again. Yet I’m still struggling to walk & got my driving licence back.

People with no medical knowledge, prescribe what they think I should take.

The only problems, I’ve noticed are. The people I knew, seem to mentally list my possessions & abilities. Then disappear once they have acquired something.

Some people say they’ll do jobs & that’s the last I see them.

Is PPMS even real? Or has society all become odd, pushing their political agenda & blaming anyone for anything for gain?

Terry

I think it does exist Terry… but well done to you …you play by your own rules it’s marvellous how you’ve got your driving licence back and you have proved them all wrong by walking. I think each person is affected differently and the most Important thing is having a good outlook. I try to be realistic and be happy over what I can still do but not beat myself up too much over the things that I can no longer do. Michelle and Frazer xx sent from my mobile

I do as much as I can & collapse. I just don’t understand the fixation with medication, for a condition with no cure.

People even tell me to take the prescription & bin it. What’s the point in that?

I also know people with no problems, who take medications & walk with sticks, to look sick. It actually makes me sick to know.

Taking cereal bowls full of medications, to act sick is ridiculous. They give, genuine sick folks a bad name.

After seeing blind people pick up change & someone in a wheelchair running down the street. I just feel like I’m in the Twilight Zone. I’ve never noticed how fake people are, until having problems. It’s comical! NOT!

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I take some medication but as little as I can mine is iron tablets although i had an iron infusion this time because of severe anaemia and some for over active bladder. And vit D because it’s low and HRT to stop the mood swings and to stop me being a grumpy old woman. Every one is different. I think there probably are some fake people but a lot that arnt Lee works for Guide dogs for the blind and he says that some people are affected by tunnel vision and some night blindness I wouldn’t like to judge anyone on some days I’m better than other days but would never fake anything. Michelle and Frazer xx sent from my mobile

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Just had some Oatcakes, with cheese, tomato & brown sauce. Whilst playing online Scrabble.

It’s pretty obvious what the political bull shit issues are with life. They target folks with problems.

It all stems from jealous neighbours & clueless idiots, with a sick agenda.

Another week to wait, for the delivery of a mini bus & off I go. Parasites, will always be an issue & there’s nothing anyone can do or say. I’ve had enough stolen. I’m done with the human vultures. Believe the media muppets.

Trust those, who are green with envy & live on Facebook. Craving popularity.

eee Terry, you`ve been so hurt, misjudged and robbed.

It`s sad to know someone has been so badly treated.

My circle of family, carers and friends are helpful, kind and caring.

But there are times when i feel alone and sad.

I do my best to lift myself up out of a down time.

So are you going away when you get your new transport? Is it a camper van?

pollsx

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It’s just a basic mini bus, on mobility. So I can go kayaking & do useful things. After being stuck indoors for years, getting everything robbed by the local scum bags. I’ll be glad to pursue activities that I’m interested in. Steering well clear of the loud mouthed idiots. It drags folks down, listening to their crap. Blaming others for their insecurities. There’s a certain wining tone that makes me physically sick. They hang out in mobs outside, blaming the world for their messed up lives. They hated me working & having a life. When I was stopped from working & had my licence taken. It made them, much worse.

Things are getting back on track now. Yay! No more listening to the so called medical experts.

I have my blue badge & proof of my problem. Their problems can disappear.

Drink, drugs & useless ability to control their finances. Blaming everything on someone who can’t walk. Covering up their scrounging tactics & dragging the country into the dark ages.

The only people they care about, is themselves. So I’ll do the same.

I’ve done nothing but help others my entire life. Now, I will help me.

Have a fantastic day Poll. Do what makes you tick.

Terry

Hi

I too have ppms!! Don’t visit the gp with my ms as its a waste of time The ms nurse and Neurologist have nothing to offer!! BUT there is going to be medication out there for us soon!! How soon I have no idea, but I’m keeping everything crossed that it can help stop the progression of this awful illness

2018 Could be our drug year!!!

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Hi Candystripe

Welcome to the forum, lots of lovely people here, even though it’s a club that no one ovule choose to join.

We live in hope that something to help is just around the corner.

Pam x

Hi there Candy, things will get as good as you want them to be.

PPMS is aweful, but it’s not over. Things to do & stuff.

Terry

[quote=“skippysprite”]

Hi Candystripe

Welcome to the forum, lots of lovely people here, even though it’s a club that no one ovule choose to join.

We live in hope that something to help is just around the corner.

Pam x

[/quote] Hi there

I was diagnosed with PPMS in November 2015 after 6 months of being passed around quite a few dismissive medical professionals. I am in my 40’s, married with 3 daughters so it was a total blow. I finally saw a GP who took me seriously as I was pretty sure I had MS as a good friend of mine had been diagnosed a few years before and our symptoms were frighteningly similar. I started off with a dragging left leg and trouble walking, pins in needles in my legs and right hand and around my middle, fatigue. After finally seeing a neurologist and a 4th MRI Scan of the brain and spinal chord with contrast the conclusion was PPMS. It is my understanding that you know you have PPMS when the contrast that is injected half way through the scan does not show active disease and therefore the lesions that are there are old scars and been there quite a while and so not treatable. Disease modifying drugs are not effective on the old scars but can reduce inflammation and prevent attacks in people with RRMS. However, there is apparently a new drug, Ocrelizamub or something like that which halts the progression of the disease which is a breakthrough and hopeful. There is also talk of using statins to do the same thing. I can totally empathise with everyone on this forum. I think the biggest hurdle is mental attitude. How to stay strong when you have such a debilitating disease. The overcoming MS website and book by George Jelinek who is a dr and ms sufferer has excellent advice on ways to alleviate symptoms. Changing diet,exercise (a tricky one when you feel so tired all the time), vit D, meditation and a few others have all been helpful. My philosophy is if I have a good day I try to really appreciate it but if I have a bad day I try and go with it knowing it will hopefully pass, although some days easier said than done!

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Very informative & helpful post! I like when folks, say it, how it actually is. None of this lynch mob mentality crap & idiots prescribing anything & everything. Just because others take a cereal bowl of medications every day. Learning & doing stuff helps.

Terry

You and me too,l see it everywhere,these people ought to have m.s for 24hrs just to show them the pain and disability it brings,they used to boil my blood but l see that much of it that l turn off to it now.