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Autoimmune disease

MS-related query -concerned about my brother

10 replies

Amoregentlemanlikemanner · 08/01/2018 21:42

He is in his early 50s.
14 years ago he emailed me to say he had awoken with reduced sensation in the ends of both feet. I supported him in getting back to the uk, to a neurologist,to get scans etc but obviously I was more on the psychological side (he was very afraid)
He had a scan and I saw the word sclerosis but he doesn't have a Dx of MS. I think that's because it was a one-off "attack".
I went to his final visit to the neurologist who said he should put it behind him.

Since then he has avoided climbing ladders, uneven ground.

This year he mentioned avoiding uneven ground and running, even on treadmills.

We walked to town this year. I live at the top of a steep hill (very steep). He was slow but visitors often find the hill a challenge.

What worried me was that his gait changed to something really strange. Sort of throwing his legs in any direction, as if playing for laughs (ministry of silly walks). He said "oh this happens on hills"

Is this just part of getting older with a deficit? I wondered if he should go back to dr. I don't want to trigger his anxiety but nor do I want to neglect the situation if there is medicine availability.

I would appreciate any light being shed on this!

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Time40 · 08/01/2018 21:51

I know someone with MS who is just like this (he says it's because he's not quite sure exactly where his feet are going to land when he's walking). Perhaps your brother knows that he has MS, but he doesn't want anyone else to know for the moment?

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MrsEricBana · 08/01/2018 21:57

You sound very caring indeed. I think just gently ask him how his health is and see what he says. If he's worried he may appreciate you going to GP with him. MS can be so variable. A friend was diagnosed with it around 12 years ago and is not very much worse now, so that may be the case for your db.

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Amoregentlemanlikemanner · 08/01/2018 22:02

Thanks.
It was a bit like this:
m.youtube.com/watch?v=Tb8INWSH9xc

The nerve loss to his feet has been pretty constant so I'm hoping it's just that he's never (since it happened) been able to do hills like mine IYSWIM.

Is walking uphill more challenging if you have a neurological problem?

He isn't tired, no double vision ,eats well, swims, works out at the gym etc.

Is "clinically isolated syndrome" a possibility?

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Amoregentlemanlikemanner · 08/01/2018 22:04

Time, in terms of privacy, he wears his heart on his sleeve, it's all I can do to make him come to me not our frail elderly parents...

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Yogagirl123 · 08/01/2018 22:10

Did your brother have MRI, head, cervical and whole spine? Were any active lesions found on his brain or spine? Speaking from experience (I have MS) most MS diagnosis are via MRI. Has your brother had any visual disturbances, dizziness another very common symptom of MS. Walking is a challenge for me to very poor balance, falling about etc, as I don’t look “ill” people assume you are drunk! If your brother is still experiencing symptoms, he needs to see his GP again for referral. I hope he has an answer soon and can start on some treatment very soon, good luck.

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Yogagirl123 · 08/01/2018 22:22

Clinically isolated syndrome (CIS) just means a first set of documented neurological symptoms, my first attack was Transverse Myelitis, lesions found on my brain, and two areas of inflammation in my spinal cord. So that event was recorded as CIS, I was told as the same time as the TM dx by Neurologist that he thought it was MS, I experienced a further attack two years later that confirmed the dx of RRMS. Your brother may not have MS at all, but his symptoms definitely need further investigation.

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Amoregentlemanlikemanner · 08/01/2018 22:26

Thanks Yogagirl.

Not looking forward to this. He has lots of health anxiety about everything other than the feet-issue. I have been proud of how he has come to terms with it.

Blast.

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Amoregentlemanlikemanner · 08/01/2018 22:28

And yes he had full MRI and lesions were found in the brain. Transverse myelitis rings a bell.

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Yogagirl123 · 09/01/2018 07:47

Try not to worry, your brother can still live a good life even if he does have MS, if an MS dx is confirmed he could take a disease modifying therapy, I am on my second one now. Be assigned to an MS nurse specialist who can help with MS issues. Have annual MRI to check activity of the disease etc. MS is not all doom and gloom, it’s about keeping a positive attitude and being adaptable, I have long since accepted my dx, it was very difficult to accept at first I won’t l and you certainly find out who your friends are! My official dx was in 2014, TM 2012. I have had to make a lot of changes to my life to make things as easy as possible. You learn to live with the symptoms. I hope your brother gets on ok. Message me if you want to know anything else I will tell you the truth based on my experience. Have you have a look at the MS Society and MS trust websites? Both trusted information resources. Also, TM can be an indicator for MS but not everyone that has had TM will go on to have a dx of MS.

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Amoregentlemanlikemanner · 09/01/2018 08:29

Thank you Flowers

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