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Just been diagnosed with PPMS

Ah man, I knew this was coming for the last month, but here we go - formally diagnosed today with PPMS, albeit I have to have a spinal tap to underline it. So thought I would join the forums and reach out to other people who are on this journey with me. Not a journey I would have chosen but there you go…

The stupid thing is, I feel good - slight limp, that’s it. I’m 49, had an MRI with spinal lesions and long standing deteriorating limp. Reaching for wine tonight, will fight this thing :slight_smile:

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Anne, welcome to the forum that we all wish we didn’t qualify to join!

Your last sentence above is the key in my opinion. I do exactly the same, glass of wine and mentally tell the MS Monster to bog off!

Keep fighting girl.

Tippy x

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Thanks Tippy!! Banging head today though, OMG. All feels a bit unreal, and I’m not quite sure what to do. Nothing just yet, it’s such a lot to take on board. The ridiculous thing is how well I feel, I can’t get my head around this. I took it pretty badly last night, lots of tears, but that’s it, today I am getting on board with it. Self pity party has left the building!!

Welcome to the forum Anne. Sorry to read of your conformation. It’s not so bad, so long as you stay in charge. Only you’ll know what your body needs. Be it a glass of wine or a total detox & fitness shake down. Giving the vessel a boost, for the next adventure.

Terry

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Hi Anne,

Congratulations! We are in a very select group, only around 10% of all people with MS have PPMS. Not that the name means anything.

However, it’s still your life, just not quite the one you were planning for. My attitude is, carry on living life to the full (and empty a few bottles on the way).

Best wishes,

Anthony

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Thanks guys, that’s a nice welcome from you all! Well, it’s sinking in slowly - I have no idea what to make of it all. Everything seems geared up for the ‘popular’ forms of MS, the stuff on PPMS is pretty grim reading. So, trying hard not to google too much, because at the moment I feel absolutely fine. It’s been a very slow long lead in to this, gradual limp starting about 10 plus years ago, so I’m kind of hoping that it will continue to be very slow carrying on. I don’t know, I need to get on board with this without going under.

Psychologically it’s weird too. I can’t be too happy because there is no fricking treatment. I am not 100% sure why there was a rush to diagnose given that, it feels like a grim diagnosis without much point. Chugging down the D3 and biotin, not sure if there is anything else I should be doing. Probably chasing snake oil salesmen, so I need to be careful of that.

Can I ask everyone how you’re doing with this thing, how long you’ve had it and where you are with it?? I don’t want to be intrusive but I don’t know what this world is like yet. Suspect it will become mega familiar real soon though…

Hi Anne

Welcome to '‘our gang’ the club no one would choose to join, but we are here and it is what it is.

Give yourself time to get your head around it, you will feel all combinations of emotions, BUT you will come out the other side, hang in there, it will get easier.

Listen to your body and if it’s telling you to rest, do it, but above all be kind to yourself, and take one day at a time.

When you are ready and have questions, there is usually someone here who can offer advice, take care.

Pam x

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Hi there Anne. I’m a 48 year old male. Diagnosed 4 years ago after I kept falling over & couldn’t get up. Then told I’d had it for 10+ years. Soon as I started listening to the so called experts, I declined at a very rapid rate.

As you’re probably already aware, your own nervous system has started attacking itself, so stay calm & keep doing things as normal as possible & improve your overall health. The weak immune system, from beating itself up, can open the door for other problems. A common cold can be bad & give you a good hiding.

Like you stated, there is no cure. So be very wary of all these things they throw at us.

You’ll be advised you are depressed & all sorts. It’s not reality! You’ll feel concerned & that could cause problems in itself. Just brush it under the carpet & learn what works for you.

I take photos with my phone as memories to save & store. The cloudy fog can make us forgetful & then they’ll perhaps offer Dementia pills.

I’d avoid all kinds until you’ve done the homework. Nothing offered is 100% & it could make things worse.

Heat is my main cause of problems & a lack of folks with common sense or morals. Be aware & find people who genuinely care. On a hot day, your legs could feel like led & you’ll be on a merry go round. The misfiring system will be having a field day. It can be calmed down by a glass of cold water & relaxing.

I attend a group of people with MS & everyone is at different stages. Your unique problems, will show the situation out eventually, so take advice with a pinch of salt. You’ll find your way & folks on this forum will give their advice.

All my best wishes out there.

Terry

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Hi guys, thanks for all the nice comments, really helps. Puddle, good to hear how you are and your background. I feel very isolated just now. Still in a bit of shock I guess, back at work today and all going well. I have to have a spinal tap and some bloods over the next few weeks, but basically my neurologist said that was to confirm the diagnosis of PPMS - it’s unlikely to be anything else, hoping for Vit B12 deficiency, but she said v unlikely. I feel strangely positive today; maybe the anticipation of this has been terrible, and now it’s here I feel sort of resigned? I don’t know. Hope everyone okay today, it’s nice to have somewhere to talk about it. Can I ask what people are taking to help? I’ve been chugging down D3, B12 and biotin on the grounds that it can’t hurt. Anne x

Hi Anne,

You’d like to know what your life with MS is going to be like. That’s impossible to answer as every case is as individual as you are. There is no defined progress of the disease. You haven’t done yourself any favours by reading the stuff on PPMS. The truth is that the “worst cases” of PPMS are extremely rare.

The only difference between PPMS and the other types is that there are no remissions, or breaks, in the symptoms with PPMS. As you’ve progressed very slowly so far then I think that you’ll continue to enjoy all your activities as you’ve always done.

I was diagnosed with PPMS about eight years ago and I was given Vit B by my GP at the time but don’t take any other supplements. I haven’t had any sudden or overnight decline and I don’t expect to. Although I now use a mobility scooter around town, if it weren’t for being married, I’d be spending my spare time sailing. (And drinking more wine.)

There is life after MS, all you have to do is make it happen. Same as before.

Incidently, we don’t mind “intrusive” questions or of an intimate or personal nature. Openness and honesty is what the Forum is all about.

Best wishes,

Anthony

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Hi Anne

I suppose it takes a while for the new information to settle in.

Life is still good. Just different. That is what you have to get yr head around.

Good folks on here. Always a smile or an ear or an u understanding word.

Good good folk.

Anne

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It’s true that there are no approved treatments for PPMS, but ldn might help and is worth a look.

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Whammel, are you prescribed LDN or know anyone who is - if so how effective is it and what about side effects? I’ve heard of LDN but that’s all.

Tippy x

Hi Anne,

Welcome to the forum.

There’s lots of lovely people on here that are on the same journey as yourself and there’s always somebody around to offer support and advice about MS and it’s symptoms.

Take Care.

Twinkle Toes x

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I have been prescribed ldn on NHS since 2004 and most of the modest improvements are still with me, so no intention of stopping. The only side effect I noticed was a few weird dreams in the first week and that was about it.

While there isn’t much in the way of scientific evidence to prove ldn works, the drug is taken by thousands, which is quite a lot of anecdotes in my view.

Take a look at the link I provided and see if you think it might help.

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Thanks guys for the welcome. Still a bit weirded out by it all, but all tips gratefully received. It’s my husband I feel sorry for, he’s struggling so much with this and wants to DO something at once. I keep saying I haven’t had a firm diagnosis yet (except the neurologist said she’s pretty sure it will be PPMS but wants to wait for the lumbar puncture to confirm it). Interested in all ideas, the LDN looked interesting Whammel, and definitely something to explore.

Hope everyone is having a good weekend.

Anne x

Hi Anne,

We always say that MS doesn’t only affect one person. Our partners are inextricably connected and men, who often see themselves as “action” people, feel that they are powerless.

I would suggest that it’s a good idea to look at keeping fit. MS can affect the nerve signals to the muscles so the more efficient the muscles are the less likely they are to be affected. Anything will do. If you don’t like playing rugby then yoga, tai chi or pilates are just as good (probably better).

Best wishes,

Anthony

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Thanks Anthony that’s good advice. I definitely feel like a life style change is acoming. I have a treadmill so there is no excuse for not doing safe walking at home. Going to look into pilates and yoga too, to help with flexibility. I feel that my thoughts at the moment are expect the worst but try for the best, being realistic but not giving up. It’s a bit of a mind **** to be honest, I feel fine, just with a limp. But the diagnosis is a horrible one. Gah.

I think I’d like to meet people with the same thing as me, try to chat it through. I’m a talker, and for me that’s a way of coming to terms with it. I mean, I am sooooooooooooooo lucky to have got to 49 and not be struck down earlier, and I also feel mega positive about the slowness of the progression, that feels like a good thing too.

It’s weird how this is affecting me, I have ups and downs but the big sobbing fest of wednesday hasn’t come close to returning. Maybe I was prepared for this for the last six weeks. It’s nice to have a place to chat too.

What did you all do about telling people? Did you leave it for a while, friends and family and work I mean, not partners.

Anne x

I told people straight away phoning my family (94 year old father, two sons and their wives, two sisters and husband’s two sisters.) I told friends as and when I met them, including a group I was meeting with on the day of my diagnosis! I hadn’t been very well and it just seemed the right thing to do to explain things. Everyone has been so supportive and now that my neuro physio has made me so much better I almost feel a fraud!

It really is up to individuals to decide what’s best in their situation. We’re all different.

I’m sure whatever you decide will be right for you.

Moira

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Hi Anne,

Have look around for a MS group in your area.

Meeting up for glass of wine sounds like your cup of tea. I go to a monthly pub group, which is often very refreshing; in more ways than one.

Best wishes,

Anthony

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