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Is PPMS always bad?

sorry to post here, I have no official diagnosis. For the past 7 months I’ve had numbness that won’t go away, the past two weeks i’ve had problems with balance and my right side is weak and heavy. I’m only 22 and my neuro thinks this is suggestive of PPMS. I feel sick and cry everyday, my question is can it ever just level off and stop or will I die young because i’m so young already? also has anyone had HSCT?

I’m going out my mind. I can’t believe this is happening to me

Hey there, try not to panic.

As with any MS diagnosis, it’s a ‘snowflake’ disease, whilst we may have similarities, everyone has their very own version of it. I was diagnosed at 42, I’m now 47 and still walking albeit with crutches. There’s no formula as to how it impacts each of us, I just know it’s more common for PPMS to be diagnosed if we’re in our 40’s.

If your MRI/tests etc. confirms MS then they’re likely to try you on steroids before confirming type etc.

There are currently HSCT trials in the UK for PPMS but you’d need a firm diagnosis before that so you need that sorted before considering anything so drastic.

Good luck tho and and don’t think you’re going to die young. When I was diagnosed, it was widely accepted that MS might mean a 10 year shorter life expectancy but that’s now been reduced to 5 years from what I’ve read - so I’ll say it again, don’t panic

Sonia x

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Thank you Sonia, I’m just so worried and dizzy all the time! Not a good mix. Having more tests on friday so I hope there will be an answer

Isobel x

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Good girl

I had no idea MS was on the cards, I thought I had a trapped nerve and was still teaching at the gym a few weeks before diagnosis - it really is so different for all of us.

Truthfully, I cried at least once a day a day for a couple of weeks after diagnosis as it’s a lot to take in so I totally understand your fear. The tears went to weekly, then monthly then just occasionally.

You’ll be ok tho Isobel and you’re not alone. I just don’t know how he hell people coped before the internet!

Sonia x

I am at the other end of the scale to you. I have just been diagnosed with PMS but need more tests to be more specific. I am 66 now, and have had a ‘bad leg’ for 12 years.

The first thing I did when I got home from the neurologist was to google MS to see if it would kill me… and No, it won’t, but it is a very good idea to do appropriate exercises. I have to wait about 3 more months before I can see an MS physiotherapist. So I have been doing some exercises from the MS Keep Active website, but I can’t do some of the leg exercises with my ‘bad leg’… so I have devised my own upper body exercise routine that makes my heart and lungs work hard such that I am out of breath. Hope it will help to keep my arms working, too…

And research seems to be bounding forward at the moment. I follow a few Neurology websites on Facebook and there are some really exciting things in the pipeline that they hope will stop MS… so who knows what’s next…

Anne :heart:

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I just really don’t want to suffer for the rest of my life. No one ever gets PPMS this young so I’m frightened. I really hope it’s something else :frowning:

I have met a guy at a local support group. He walks with a stick but appears otherwise fine. He was diagnosed with PPMS 20 years ago.

I was diagnosed in February 2016 - I was 56 and I had my first symptoms of MS in 1980.

There are never any guarantees in this life and worrying will never ever help. Any one of us could get knocked down by a bus - today, tomorrow, any time and we don’t waste energy worrying about that. Please try not to worry too much - even if it is MS - we’re all different and it doesn’t necessarily mean it’ll get bad.

Huggs

Juls

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All illnesses / diseases will follow a normal distribution pattern, a bell shape, where the majority of cases start with an age at the middle of the bell, with outliers / extremes at the edges. I’m an outlier, or, as my neurologist said, an anomaly.

Nevertheless I have had most of my life, whereas you are just starting out on an adult life which must seem scary. But whatever the diagnosis, you need to try to keep fit. Do exercises, swimming is supposed to be very helpful for all conditions that life throws at us. Try to relax, not at all easy, because some theories suggest that MS may result from stress.

There is also thought to be a genetic predisposition towards MS, an autoimmune condition, as are several other diseases. My mother had rheumatoid arthritis, RA, which is an autoimmune disorder. She used to say that I would be OK because it misses generations. Well, RA missed me, anyway… LOL…

Keep your brain stimulated. I read articles like http://neurosciencenews.com/taurine-ms-8141/ but do remember that ALL of these studies are still under investigation and might take years to get to humans… but a good chance for you…

Anne :heart:

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Like Juls I was diagnosed Feb 2016. I was also 56 years young and I reckon I`ve had symptoms since my late twenties but just ignored them and got on with life.

I was first diagnosed with RRMS and that shortly changed to PPMS. My worst symptoms were dizziness and balance but now they have improved 85%. My worst and main symptom now is fatigue but I can manage that.

So, although Im PPMS I seem to be having a reverse progression. My toilet issues have improved 95%. Im now in control.

Just as well really as I`m a full time carer to my partner Dee who is diagnosed with Dementia.

Don’t be worried about PPMS. I was diagnosed in Jan 2014. Had so called friends saying I’d be dead in 2 years, when all they wanted was money. The more I struggled, the more they taunted. Until they took everything & praised themselves. That’s what people with MS need to do. Look after number one. Steer well clear of idiots & look after your health. That’s what your body is telling you. Eat healthy & get fresh air in your lungs. Light exercises & taking it easyier. Enjoy life & make green foods your friends. With the odd splurge of T-bone steak & all the things the experts tell you not to touch. Feel the balance. If someone gets jealous of your achievements. Do it more!!!

Try some Apple Cider Vinegar capsules with Kelp & vitamin B6. Omega 3 oils, Coconut oil, Krill all, vitamin D3, walnuts, parsley & listen to some tranquil sounds. Your central nervous system needs a break & some pampering. I went for a walk, bare foot in the snow to improve the circulation in my feet. It was exilurating & makes you relish a warm blanket even more. Book some driving lessons & all the things you want to do. I was advized to stop making electronic sounds with my synthesizers. A very bizzare request. Those people will look after your finances too & eat all your chocolates. All you have to do, is look after yourself & everything will be alright.

Thanks everyone. Trying to keep calm, I’ve no definitive diagnosis yet, there are still many possibilities to explore. Thanks for your help

Hi Isobel, I’m sorry to hear about your problems. The stress can’t be any good for your health and I know it is easier said than done, but I’m sure that the sooner you are able to put any pessimistic thoughts to the back of your mind the better. I think that I have been lucky in that having been diagnosed with PPMS in my 50’s I am still able to get around, at the age of 78, mainly without sticks. Although not diagnosed until a late age I was having problems in my late teens and my neurologist told me that my PPMS was a very slow progressing form. So hopefully you will also be lucky like me. You just do not know and can only make the most of your life and try and keep fit and active as possible . I feel for you and wish you all the best and sincerely hope that you will soon be able get on with life putting any upsetting thoughts to the back of your mind and making the most of each day as it comes.

Good luck with your degree.

Jeff

I meant to also add Isobel that the chances of dying young as a result of MS are probably on a par with the chances of dying in a road traffic accident, so try and put that idea out of your mind.

Jeff

Hi Isobel just answered your pm … sorry only just read it been hell of a week but I see others have said the things I have

i know it sounds hard but try not to worry too much and wait for the tests

good luck

Thank you everyone. Hoping for good results x

Just got a blood test back, I have really low vitamin D and will be on 20000 in per day for 2 weeks. Could this be causing my issues?

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It can cause symptoms that mimic ms as can vitamin b 12 deficiency

Thank you! Hoping that it’s just a deficiency

Mine is always bad from worse to worse had it 4 years i am now 38 nothing i take helps me at all.