Forum

Age at dx

Good Morning my lovely friends,

It’s a gorgeous day, clear blue skies, and my furry woofit companion ( Rufus) is curled up on the sofa with his teddy!

I was just wondering what age you were first dx, were you dx straight away with PPMS, and how bad were your symptoms at the time?

I hope you are all having a brilliant day, and you all have the clear blue wonderful skies we hare having here.

Polly xxx

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Hi Polly,

I was dx at 50 with PPMS but when I saw neuro and told him I had other symptoms which had been going on for years he dx me as having SPMS.

All I know is my symptoms and walking are getting worse whichever it is.

So not the best birthday present.

Lovely day here in Aberdeen.

Mags xx

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Hi Polly

I was 59 at dx, just back in January this year. I have been getting less and less mobile for the past four years, got my first wheelchair in 2011.

It took a long time for the neuros to sort things out because the issue was confused by my treatment for non-Hodgkins lymphoma in 2010.

Who knows when the MS started developing? I can remember being extremely fatigued at times during the years before the cancer, but was that the developing cancer, the developing MS, or were the both linked in some ways? They tell me that the two illnesses are not connected, I’m not so sure. And I’m not best pleased at being lumbered with both, though medical science has effectively cured me of the cancer (touching wood very firmly!)

Kev x

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Hi Polly, I was dx with MS when I was 55 and PPMS when 57. I’m now 61.

I was mis dx when 53 with ME.

Now looking back I know I had many years of symptoms, periods of very bad fatigue, light-headedness, dizziness, painful legs, pins and needles etc etc etc… so I actually think I might have had a mild RRMS and now have SPMS.

By the time I was diagnosed I already had poor mobility, was walking with stick, and bad fatigue, buzzing/vibrations in legs/ problem with heat, reduced sensation in patches on body and cognitive problems (that was the most scary… I would be at work and got very confused doing simple spreadsheets and stuff… locking myself in the loo and crying).

By the time they told me it was MS I had already realised that myself, and the same when they told me it was PPMS.

Overcast and chilly in London…

Pat xx

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Hi I just shy of my 43rd birthday when offcially dx. However, I had definitive PPMS symptoms since 2007 (as a 37 year old); a combination of stubborness, denial and busy life meant I didn’t bother seeing a GP about it untill the end of 2012. Since 2007, main problems have been a limp, not being able to run (used to be v.sporty) and acute spasticity, especially at night. Decided something needed to be done when I stated dropping things all the time with my left hand in 2012. From GP visit in November 2012, was eventually dx in March 2013 after the usual series of scans, lp’s etc.

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Thank you Mag, Kev, and Pat,

Thanks for taking the time to answer this, Kev I’ll touch wood with you and for you, I had a hysterectomy last November for ovarian cancer and it’s certainly exhasberated the MS symptoms, I was 37.

Ive got a wheelchair for when I go out for things with my hubby, and I’ve got my two crutches for little distances.

Pat I’ll send some sunshine down

Polly xxx

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Hey CP, you had the same initial symptoms as me, and the same reaction to them … Ignore them lol!

Polly xxx

Hi Polly

Problems started for me at 29 with numb patches on one leg, gp monitored me and then sent me to neuro, all tests and told at 31 ms, told it was progressive, had yearly check ups for 8 years and not seen one since.

Back then there were no ms nurses, nor medication apart from steroids and pain killers, it was just a case of getting on with it. I consider myself lucky (?) in the respect that it has been a slow gradual progression from sticks, crutches, walker and wheelchair, but by using those tools has allowed me to have freedom and independence.

Pam x

Hi Polly

My symptoms started in April '13 when I was 55, but worked through them / ignored them at first. It wasn’t until I developed a bit of difficulty walking (left foot slapping down) that I started to take notice, then waited a few months before seeing my GP.

Saw Neurologist in December last year and diagnosed with RR, but he referred me to his colleague who in turn reclassified it to PP in June.

This thread has made me think and I have started another re taurmatic events and triggering MS, seeing some of the replies so far.

Good Luck

Paul.

Hi Polly. I was dx last year at 43 with PP. I was in limbo for years as I had bizarre neurological symptoms and saw a specialist who first thought I had ms but when he did my MRI he noticed that my spinal cord was crimped in my neck causing cervical myelopathy. I had a new disc inserted but had to wait for a year afterwards before they’d review my neurological symptoms due to the damage and healing time. When my symptoms persisted I was scanned again and they found brain lesion but thought they might be the result of many years with oh migraines and referred me to Neuro who admitted me and did an LP which showed bands which was a definite positive.

Looking back I think I’ve had it for at least 20 years but I was too stubborn to see anyone, I felt like I was a hypochondriac and my symptoms were too vague to make sense to me so I didn’t think anyone else would either, It’s a funny old illness.

Cath x

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i was diagnosed age 32,they diagnosed me with rrms,but i think by the time i got my diagnosis i was already secondary progressive, from the age of 17 i kept having episodes where i felt really ill, they then cleared up for months and years at a time,i remember going numb from the waist down fo 12 weeks after i gave birth to my son 36 years ago,

then when i was 32 i had a very bad fall and landed on my coxic,(spelling)6 weeks after that i was admitted to hospital as they thought i had a stroke or brain tumour,because i lost my speech and the use of my left side,i had a lumber puncture and MRI,and was given my diagnosis…i never recoverd fully from that… i lost the ability to walk …i could and still can only manage a few yards,and my swallowing never came back to normal.

they have diagnosed me with spms a few years ago, then a few months ago they said imaybe i was still rrms because i still have relapses, ??? they are a lot more severe now, and it takes me many months to partially recover from them, but each time i have one it leaves me a lot worse than before,and although its not common,you can be spms with relapses…so who knows what label i am…

i have never felt well from the time i got my diagnosis,so thats why i think i was spms on diagnosis and not rrms,i had been having the rr all those years unknown to me from the age of 17 to 32.

J x

Thank you all for taking the time to reply and also for your honesty, I know it’s not easy going over things sometimes for some?

im stumbling my way through trying to make sense of my PPMS thinking if only is spoken to the doctor sooner, or if only I had done this or that? I might not be as bad as I am. But that doesn’t even make sense, I’m still logical enough to know that.

Paul I like the idea of your new thread and will add on to it.

I feel sorry for my kids, seeing me as I am, but we are all learning to adapt to it.

Polly xxx

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Hi, good thread Polly, what I have picked up from this is Diagnosis seems to be mainly Based on the history we give at first consultation, I know after my 1st consultation I reflected a lot on symptoms I suffered many years before the concluded date it all started.

Diagnosed Nov. 2013 46yrs old, Neuro concluded had it about 9 years previous. My Mobility slowly declined by 50% between May and Dec last year hitting a full stop in January, I was given steroids for a week that Got me back on my feet ( i could stand and hobble round the house)which baffled the neuro. In his report after this he described my diagnosis as PPMS with relapses? Maybe he thought I was exaggerating!

main symptoms are; head,neck,spine pain in 2 lower back areas, right side is numb, drop foot right, pain in left shoulder(could be secondary pain as Pat said) numb toes now both feet, balance problems, blurred and double vision. Most recently burning feeling in both legs. Painful spasms,Depression,Last but not least fatigue.

I can’t walk outside at all unaided and then for only a very short distance, can’t stand for more than 5 minutes indoors before my whole body starts lowering to the ground my back and legs give way. Cant feel anything in my hands, can’t lift my foot from excellerator to brake in the car anymore. Can’t sit upright for longer than 20 mins pain in spine and neck. takes me an age to sit and get up on my feet. Getting up the stairs is agonising.

totally p***** off with PPMS.

I know Pauline, I’m still at that stage of being totally p*****d off with it, I still look at whats changed in my life, and the pain and disability. Get annoyed by people saying think positive and it will not be so bad … Em yes it will, I will still be feeling all this and dealing with all this, I’m just doing it in the best way I know how!

thank god for this forum, this is where we can understand each other, no need to put on a smile, no need to hide feelings.

Sounds like you’ve had such a steep decline honey, I think that’s what I’m fearing, what’s next? But you guys will get that, don’t get me wrong, it doesn’t overcome all my thoughts all day every day, it’s just there in the back ground.

If you ever just want to chat or anything just mail me, anytime

Polly xxx

Hello Polly,

I was finally diagnsed at the age of 37 after visits to the GP with various symptoms over the previous 10 years. It was also 3 years into my new career. With everything deteriorating gradually, I’ve had plenty of time to cope with being totally exasperated by finding basic tasks impossible. I’ll never get used to it and will often defy it. One has to be philosopical about the consequences of defiance however.

Best wishes, Steve.

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hi Steve,

thank you for your comment, as a newly dx can I ask you to explain the consequences of defiance? I know that I try to not give my MonSter too much air play in my life, however if I don’t give it some mutual respect it will bite me and attack me to floor me and make me weaker still. It’s a bit of a dance like boxers do in between jabs, if that makes sense?

keep well Steve

Polly xxx

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Hiya Polly I was diagnosed when I was 18, 18 years ago :slight_smile: it took about a year and a half of going back and forward between my gp and different consultants. As I also have spina biffida occulta the orthopaedic consultants put everything down to that at first. It was like they discovered those 3 vertebrae not fused and that was the reason behind all my symptoms, which at that point were going crazy. I honestly struggle to remember it all, it was that long ago but what stands out was when I woke up one day and my hand was claw like and numb upto my elbow. Referred to nuerology who sent me for an MRI scan an then a few wks later I was in his office being told I had this joyous little disease MS. I’d never even heard of MS at that point, I really hadny. I didn’t have a clue what it was or what it meant for me. 18 years on I’m still walking. Granted very poorly and some days it just doesn’t happen at all but I’m still walking… :slight_smile:

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Hello Polly,

As I see it the consequences of my defiance are the days I am incapable of doing anything more than sit on the sofa! Such days are unpredictable as sometimes I seem to have an extended burst of energy. But it always catches up with interest; that is one day of activity = two or more days of consequential pennance!

Bes wishes, Steve.

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Hi Polly,

I was diagnosed in May 2013 and told it was probably PPMS because I was 49, still waiting for this to be confirmed. I visited my GP in March 2013 because I was starting to limp after I had been walking for a while, never expected to be told it was MS. Walking has deteriorated but I can still get about, have some problems with my hands - stiffness and difficulty with fine motor skills and most days I have numbness and tightening by my ribs - possably MS hug although fortunately not painful just uncomfortable .

Jackie

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New to this forum and lots of questions - First one = Do MS and Diabetes go hand in hand?

My partner is being treated for diabetes and high blood pressure, but in addition I am sure he has MS but the GP is missing this. How can I speed up diagnosis?

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