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Is it normal to be PPMS at 30 ish?

So I was diagnosed 4 weeks ago with MS he said too early to say for the type I have was given steroids which have helped on emptying my bladder so that is good and I read PPMS doesn’t effect eyes as bad but I have floaters neurologist says that is not down to my MS and it’s down to uveitis I see neuro and eye specialist in November.

A letter to my gp says mri brain typical lesions vep bilateral delay and oligocional bands positive type 2 he says I had 4 out of 5 weaknesses at left hip and subtle weakness at right hip Ms phenotype unclear possibly progressive EDSS 6.5.

I’m only 34 though and very disabled being referred for OT and neuro physio and Ms nurse and put on anticholinergic after Ms nurse does a bladder scan.

Thanks.

Hi Alysea,

I was diagnosed about 16 months ago at the age of 49 and I was told because of my age it was probably PPMS, but I was told it would probably be a year or so before I was given a definite diagnosis. I have an MRI next week and I see the Neuro in November I might then get an answer. My symptoms have been fairly unchanged which might suggest PPMS. Everything I have read says the PPMS is usually diagnosed in people over 40, 34 seems too young and I would think it is probably too early for anyone to say for sure.

Jackie

I have been disabled for over a year, using aids but housebound for over a year and he’s suggesting progressive to my gp as I’ve not had any relapse and a year is a long time, I was hoping relapse but if he is saying progressive well possibly, he is a Ms specialist I guess he knows better I think he may say for definite in November I don’t think steroids have worked.

I was diagnosed at 37 and had been having undiagnosed problems for several years

Don

Hi Alysea, I’m so sorry to hear you’ve been having such a rough time.

Although PPMS usually affects people over 40 it can affect much younger people. In fact a year or so ago we had a young woman on here in her early 20s diagnosed (dx) PPMS. So like all things MS, there are no hard and fast rules.

The same with the eyes, it’s usually people with RRMS or secondary progressive who have eye problems, but again some people with PPMS have eye problems. In fact one of our regular users with PPMS has got optic neuritis at the moment.

All you can do is hang in there and wait and see. I would say it does sound like PPMS but then again your bladder reacted well with steroids which would not normally happen with PPMS. But again (I know it’s bloody confusing!!!) we have had people on here who’s neuro’s have tried them on steroids with some success.

I know it’s a common belief that PPMS is the ‘worst’ MS, but that’s not necessarily so. Aggressive RRMS can be very bad and more disabling than PPMS.

Another common myth about PPMS is that once you’ve got a symptom that’s it, you’ve got it forever. Not true! Symptoms can come and go, get worse and then get better again. In fact it can be very changeable in even a day! I can start a day very bad and pick up later… or visa versa. I can’t start a new paragraph for some reason… so will have to finish with a chunk of text. Keep in mind that it doesn’t really matter what ‘type’ of MS you have… MS is MS… and that it really does get easier with time. I know that’s hard to believe so you’re going to have to trust me. Come on here with whatever questions you have. NOTHING is taboo! This board is a lifesaver… really very supportive group of people. I’m very glad you found us. Bye for now, Pat xx

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Hi Alysea,

i was dx early this summer, after becoming quite disabled at the age of 38, and it’s me that’s got the optic neuritis, (i know go figure) I think Pat has put it perfectly,as far as MS goes it makes it own rules, it definitely doesn’t want to follow any.

Your OT and MS nurse will help you with dealing techniques and help you find a group or something close to you, that you might be able to get to? Do you have a partner or children Alysea?

Hugs hon

Polly xxx

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Hi, as usual, Pat has given good advice.

I learned a lot about PPMS when I was wrongly diagnosed with it for 11 years!

Turned out I dont have MS at all…but a genetic disorder, which mimics PPMS.

Anyway hun, do try to hang in there. As Pat said, although PPMS can be thought of as the worst type of MS…no, that isnt always true.

I think RRMS can often be much more aggresive and cruel, as it`s attacks can be so sudden and harsh.

You are young to face all this, but try to look after yourself the best you can, yeh?

luv Pollx

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Yeah I have a daughter no partner but I live with my mum, and dad and brother steroids helped me empty bladder completely but it did not stop the problems but I need a bladder scan from Ms nurse before I get out on medication my neuro wants to see how steroids do before he will give me medication I’m only on gabapentin at the moment.

I had an idea it was PPMS so it wasn’t much of a shock and this forum helps my neuro wouldn’t tell me what type but he gave gp an idea and he didn’t charge for a copy of the letter so that’s nice of him.

He’s not said I have ON but ophthalmologist has said uveitis and that its caused by auto immune condition all I have with eye issues is floaters which are there all time makes reading small print difficult to read or small texti do think PPMS is the worse one as steroids do help rrms but I am ok being on here helps loads so thank you all x

Alysea you’ve been given some excellent information. We’ve all hoped at some stage that we didn’t have progressive ms, or any form of ms at all, but please don’t let it stress you out. My Neuro gave a talk on ms and said that even we can have types of relapses where our symptoms can deteriorate and pick up a bit again after steroids so it doesn’t mean that if you responded you aren’t progressive.

I agree with Poll, I’d hate to spend years worrying that my symptoms were lying in wait to hit me hard in the form of a relapse. But saying that, although I’ve only had my dx for about 18 months, when I look back I’ve probably been suffering with RR for a good few years and although I felt really grotty when it flared it was never clear what was wrong.

I think the point is that you have a dx of ms, look after yourself as your symptoms can ease and worsen at any time and even appear to go away for periods of time but as long as you listen to your body you can have an excellent quality of life. You’re extremely fortunate to have family around you who can help. Please just take each day as it comes. There is still life after a dx of ms. And we’re here and will try to help and support you wherever we can.

Take care

Cath xx

Yes, agree with sound advice so far. For what it’s worth I was dx PPMS just before my 43rd birthday but was probably PPMS since my late 30s. From what I can gather 90%+ of PPMS folk tend to be over the age of 35 when first dx.

Hi Alysea, it’s all been said, I was diagnosed with ppms at 46 consultant suggested possible start was 8-9 years previous due to my history. I was given steroids when I had an aggressive attack in Jan they helped me stand and move alone. Consultants report described it as ppms with (relapse) but they did point out that they were confused as with ppms it is usually a slow decline! So to mirror what others have said MS symptoms are different for everyone it likes to keep us on our toes and is full of surprises.

Regarding consultations with all MS hospital staff I & my g.p get a copy of the written report after each one maybe you could request this.

It took me a long time to accept my limitations as a result I made life much more difficult for myself as a result, look after yourself and accept all the professional and personal help you can get.

pauline x

Thank you all xx

Being diagnosed actually have helped because I’ve been housebound over a year and that has been tough as I’m not able to take daughter to school or go to school events.

Now I want to work towards being able to walk again properly as I can’t walk more then 20 meters right now so family takes and picks up daughter as I don’t drive.

Waiting for referrals to physio and OT how many with PPMS can walk without using walking aid, I’m forever losing my balance at home and nearly fall over, im just not safe right now outside lol.

I am taking good care and being careful wish I could do a lot more around the house to help out, and this week I have to go to my local jjobcentre for a work focus interview if I fall it’s on them hehe my sister who’s my carer will be coming with me.

I just want these floaters in my eyes to bugger off had them a year, want some answers from eye specialist next month, and I’m sure I’ll get some from neuro too he’s great very nice.

Hope your all well xx

Hugs x

Alysea you can buy a folding adjustable walking stick cheaply on eBay, I prefer those to the ones the nhs gave me and needed more than one anyway as I keep leaving them all over the house. Much better than falling.

Cath x

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Hi, I was diagnosed with MS at 43 and told it was PPMS on my 44th birthday.

I still have that niggling feeling that I have mild RRMS and SPMS has snuck in, but the professionals just say PPMS

Sonia x

I use crutches that I was given I can’t really walk without them as I lose my balance and the stiff legs make my walking worse exercise doesn’t get rid of it, I’m waiting to see a OT who will measure me properly for them and waiting on referral to physiotherapist I go back to see neuro next month and eye specialist.

Neurologist says floaters aren’t down to Ms and are cause of uveitis but that’s how I seeked medical help in first place my vision is how I knew something was wrong ophthalmologist says floaters are down to a auto immune condition lol it’s strange really damn floaters and double vision is annoying.

I’m actually lucky not had a fall for a few months I keep one stick upstairs and one down lol best to be safe so that’s what I do neurologist wants to start me on baclofen at night just waiting for Ms nurse to contact me been 4 weeks and still no call can you believe they at clinic just round corner hehe.

So anyways thank you all so much for help and support I really appreciate it.

(((HugS))) xx

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Hi Alyssa

Sorry I am a bit late responding, hope your ot and ms nurse appointments are soon, they have a vast amount of experience, so I am sure they will help you.

I have ppms and was DX early 30’s after a few years of problems, so there does not appear to be any hard and fast rules when ms is involved, it does what it wants and when it wants. I do sometimes have blurry eyes, but this seems that happen when I am tired, or done too much, but never had ON to my knowledge.

If its any reassurance to you, I have had ms many years now, and whilst I use a power chair, life is still good and worthwhile, I listen to my body (usually!) rest when I need to, accept help and just take one day at a time.

Wishing you all the very best.

Pam x

thank you pam x

Mine started suddenly after I stopped my pill injection I didn’t have any symptoms until then, so it came on very fast and progressed very quick so I have been stuck housebound for a year now but I had a gp who was useless changed gp in January so I finally got diagnosed a few weeks ago.

Does it take long for Ms nurse to contact you for first time neurologist said a few days it’s been a month, back to him and ophthalmologist November I booked them both in same week I don’t think I have ON as my eye problem started June 2013 and no improvement even after steroid drops.

Hope you all have a lovely weekend xx

Hi Alysea

I would give the neuros secretary a ring to check that a referral to the nurse has been done, and if it has, ring the nurse and let them know how much you are struggling. Hopefully that will hurry the appointment up.

I feel I have been lucky (?) In the respect that my ms has been a slow gradual decline over many years, so hang in there, whilst I appreciate yours has been quick, it may plateau and slow down.

This forum is the place for you, as it offers understanding, support and friendship from people all on the same journey, so keep asking questions, I am sure someone will have an answer.

Take care and fingers crossed for your appointments.

Pam x

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I did phone last week pam, she sent another email through to let nurse know I phoned, I’m more worried about my eyes ATM the floaters make reading a struggle, and eyes get sore from bright lights too, I thought it was cause of Ms but neuro says it’s not, and it’s uveitis so I see ophthalmologist next month so want some answers then neuro a few days later.

He wanted to see how I reacted to steroids but so far I don’t see much change do they take long to work and if I am PPMS they won’t work right?

Thanks xx

Hi Alyssa

As far as I am led to believe, steroids do nowt for ppms. Many moons ago the neuro I seen, tried me on steroids, but unfortunately, they did diddly squat, apart from making it even more difficult to sleep. When he offered me the steroids, I was still at the stage of waiting to see if it was ppms or not.

I would definitely keep pushing for your appointments, and see what the opthamagist (sp?) has to say.

Such a difficult time for you (((((hugs))))) to let you know we do all understand, and are here for you.

Pam x

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