MS Society UK | Forum

Too old?

I am 63 years old and have had ocular migraines for years, extreme vertigo, hand tremors, numbness/tingling and numerous falling incidents. I have had a couple MRI’s- inconclusive, non-specific deep white matter lesions and 2 spinal taps months apart with both positive 4 & 5 oligoclonal bands exclusive to spinal fluid. The taps excluded EVERYTHING- no other infections, etc. I’ve got another brain MRI scheduled per the neurologist and my symptoms are getting more frequent and more severe to the point I’m retiring early. Is it possible to actually be diagnosed at 63?

Stating the obvious: it’s never too late for a diagnosis! More significantly would be how long you’ve had the symptoms as it’s a pig to diagnose. I was diagnosed at 58 at the start of 2021 though in retrospect my Progressive MS begain in 2016 and it’s possible I had CIS as early as 2003.

My advice would be that whilst this is something you’ve lived with for years, to the MS Doc & Nurses, you’re a New Case! Their inclination might be to observe changes from now when you really need to force them to look at your prior history. I had a hell of a battle to make them look back but persevered.

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Definitely not too old! I was diagnosed with PPMS in 2017 at the age of 66.

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Hello Bondo

Welcome to the forum. Sadly there is no limit on the age at which MS can be diagnosed. Neither too young nor too old.

I was just wondering if you’ve had a spinal MRI? If you have O bands in the CNS, but just non specific lesions in the brain, you may not have sufficient evidence to diagnose MS. But PPMS (which too often occurs later in life) often shows up as lesions only in the spine.

Have a look at McDonald criteria | MS Trust Maybe you can request that your scheduled brain MRI is extended to be of the spine too?

Sue

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Additionally, I had a spinal mri 5 years ago with no spinal lesions. I suspect my new neurologist will order a spinal mri depending on new brain mri results.

I’ve had two lumbar punctures several months apart. 1st one had 5 bands exclusively in spinal fluid and 2nd one had 4 exclusive to spinal fluid. The neurologist was a bit surprised when 1st one came back positive for bands and again perplexed with 2nd one. She told me to watch for any more symptoms and if/when to make a another appointment for another mri but we moved and I then had severe vertigo 2 different episodes- went to ENT dr and he excluded ear problems then sent me to neurologist. The new neurologist got my records and is scheduling another mri in march.

Both neurologists I’ve seen have mentioned Benign MS as my symptoms are so far apart with little lasting effects but hoping for the best but won’t be totally surprised with a possibility of MS. I’ve just assumed symptoms were age related but the last SEVERE vertigo lasted 2 weeks & with oligoclonal bands positive, even neurologists were perplexed.

Perhaps you should have a look for posts by Bouds (@PBMS ) She had a complicated journey to diagnosis - first diagnosed years ago with PPMS, then diagnosis changed to Hereditary Spinal Paraplegia (I think). Then that was snatched away leaving her in limbo - told it’s definitely not MS!! Finally saw another neuro and given a definite 100% PPMS diagnosis. (Sorry if I have any of this wrong Bouds, & I hope you don’t mind my telling your story!!)

I think she would be very sympathetic and share what she can with you.

Sue

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Hi I started having symptoms in 2012 when I was 64. I was told I was too old to have MS! Two lesions were found in my cervical spine and I was told I had transverse myelitis and all my symptoms should disappear within two years and I was discharged.

The symptoms increased and in 2015 I developed a dropped foot. In 2016 I was finally told to forget the transverse myelitis diagnosis I had MS!
My diagnosis became single episode progressive MS. My lesions are in my spine.

I do hope you get some answers soon.

Sue

Hi Bondo

It is harder to get a diagnosis the older you are - you are more likely to have areas of damage in the brain - the so-called ‘non-specific’ markers due to age / longer life-time and exposure to pathogens, which can cloud the issue somewhat - so neurologists have to tick more boxes for you than they do for a younger person as the probabilities of other causes in an older person are greater.

At least you are on their books and are doing a follow up.

Hi Bondo, as Ssssuuue said, my journey is quite a story!

here it is;

at 45/46 I began feeling not quite myself…I was up to this point, active, healthy and had a bubbly spirit.

Then my left leg became heavy…felt like dragging a log around attached to me! Next came stumbling and falls…some were quite dramatic…fell at the end of an opening canal bridge and just avoided being swept into the water! I put all this down to weight gain.

Bladder and bowel accidents added to the mix. A year later I decided to seek medical help.

I saw a neuro…the first of 17! Test after test revealed zilch…MRIs, LPs, EMGs, VEPs, bloods…although I presented as very typical PPMS.

The poor mobility progressed rapidly. Leg stiffness, spasms in legs and arms were nasty. Fatigue was horrible.

I was put on amitriptyline which did give me good sleep.

Some years later, HSP was diagnosed and MS was completely ruled out. Then a genetic test proved HSP was wrong!

Nothing for a few more years, but I was seen by more neuros at Wakefield, Dewsbury, Huddersfield and Halifax hospitals.

A mutual discharge was agreed as I was sick of seeing neuros for nothing, in 2017.

Two years later I saw a fantastic neuro at The Walton Centre in Liverpool…he had me in the hospital for a week of tests and hey presto! He saw the hiding lesions on my cervical and thoracic spinal cord!!!

He diagnosed me with Rare Spinal PPMS. There after 22 years I finally had my diagnosis. MS aint great at all, but it all settled my mind.

If you’d like to know more, you cam PM me if you like.

Best wishes, Boudsxx

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I knew you’d fill in the story for Bondo.

Sue x

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