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Whats happening to...

Hi folks

What on earth is happening to the Primary Progressive MS forum?

There’s rarely any new things going on and not that many posts. I end up on ‘every day living’ so I am probably as guilty for not many posts. We are the group so come back, we are a cheerful bunch and struggle on with no damned medication that helps or that we fit into their narrow database parameters. Ah that sounds a bit like a moan be safe and take care.

M x

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Hi there! Yeah, I too have noticed that not much seems to be happening on the PPMS thread, sadly. I was diagnosed with PPMS at the end of June this year, and have been on the lookout for any useful bits of information but, as you quite rightly said, I guess we are in the ‘minority’ here. It doesn’t mean that we can’t all chat and compare notes though, so hopefully there are others out there who feel the same.

I was diagnosed with PPMS two years ago. I’m 68. I’ve just had a consultant appointment and he’s putting me forward for Ocrevus. My scan is this coming Friday. My consultant did say that if the MRI confirmed that my MS was active I would be in a queue for the treatment as he prioritises RRMS because he wants to prevent their relapses. However, the good news is that he won’t keep putting me to th back of the queue!

Since my diagnosis I’ve been on a gluten, dairy and soya free diet and am feeling a hundred times better than I was. I have virtually no fatigue and am able to exercise in the gym for over an hour. My main issue is my walking. It’s not really that bad and I can walk a couple of miles on even ground, but without poles I struggle on more uneven ground.

I’ve been posting on the PPMS forum for 6 years. Some folks keep stuff to themselves. This whole MS situation puts me off even talking about health issues. I’ve got into endless debates with folks diagnosed 30+ years ago. They know everything. A relapse once every 30 years & living life like normal. They’re okay, so we all should be.

Changing diet & exercise, seems to be the normal advice from so called experts.

What they eat & how much exercise they do is quite shocking! Yet they have their pedestal.

Keep warm or cool & do what you can to feel good. Have fun.

Trust nobody & do what feels right for you.

Terry

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I am guilty of reading this forum daily but not contributing much…sorry, I will try harder .I have learnt a lot from you since my diagnosis of PPMS in November 2018 so I hope you all continue to contribute. Karen.

Sorry Everyone, I’m terrible for starting comments though I enjoy reading those you post. I’ll try to do better! Cath x

Sounds like a plan guys, says she who hasn’t looked in since my post 2 days ago. We can all help try not to be discouraged I was diagnosed in 2007 and I am still kicking. If a good tune comes on the radio I move what I can to the beat I think that might age me saying ‘tune’ age 63!

Stay safe M

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Hi I’m sorry me and Frazer haven’t commented for a while , I’ve just been snowed under with family issues . Weve been helping my daughter move house , shes moved nearer to us so we can help with the twin granddaughters. I feel so tired all of the time, I’m not any good with moving furniture but have the job of looking after the twins , I’ve watched Peppa pig that much I’m dreaming about it! Michelle and Frazer xx

Hi there All

I am very sorry. You are right. Very little happens on this site. I am as bad as anyone.

We need to chat more eh? I will try to be on here more often.

Night xx

At least it’s always there; long may it reign in its snoozing little way.

Steve

I think its since social media came on to the scene.That forums like this are dying a death.

I’m not sure the separate ppms forum is necessary. The everyday forum gets so much traffic and covers all topics and queries. Just my opinion.

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I’ve always liked the ppms forum best . I think the other forums feel too big and also the ppms forum being smaller is very friendly I feel there is alot more people who understand the wheelchair issues . I think I’d feel lost in the other forums. I’ll try to go on here more often . Michelle and Frazer xx

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I agree with Michelle. I do go on Everyday. However. I feel there is a very great need for the PPMS forum. We have a different type of MS. Some specialists feel PPMS is almost a stand alone form of MS.

There isn’t any treatment for our type. There are for the others. I am sure there will be for us in the future…

Only we can understand our peculiar situation. Many people I tell there aren’t any treatments for my MS are unbelieving. They cannot get their heads around it.

We understand. That is very comforting.

Anne

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I do feel that we are special. Is that permitted? I don’t ‘do’ social media and I am comfortable here, says she who hasn’t even looked in over the weekend. I would have a 'bashful emoji if I had any! I also like everyday living. So good morning everyone I hope you have a great/good week, be safe and take care. M xx

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I’ve returned from a social media group it’s too much for me, not many with ppms diagnosis or their not commenting.

I struggle to type now, takes ages for me to try get my point over clearly and I spend too much time sifting through all the subjects to find relevant ones to me, Too fast,too Noisey if you know what I mean.

Welcome to slow and gently does it! Or baby steps. M x

I agree with you, Anne48. People just can’t seem to believe that there are no meds for our type of MS. Well, there’s Ocrevus, but it wouldn’t be for me, plus I’m very interested in Metformin and wonder if it would help those of us with PPMS - trials start next year I think but, as someone else said, why on earth don’t they look at their records to see how all those on Metformin for Type 2 Diabetes and who have MS are managing. Too obvious? Sending you all luv and hugs. xx

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I have just rejoined after about 8 years away. I think I turned my back on MS, not wanting to know how bad it could get. Recently had to apply for PIP… Got a bit worried as hadn’t seen a GP for 7 years… But looks like I may get enhanced for both going by my paper based assessment. So there are some people out there that must understand ppms is different

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I will try again but not upset the moderators, if you have had PPMS for a while there is (removed by moderator)all out there.

Take care guys, be safe.

I like the idea of Metformin have we to hope for type 2 diabetes OR heart problems so we can try high dose Simvastatins. Maybe just give us everything