MS in all its glory

I have that problem too,im ok going up hill but downhill is tough. Going down small steps is the toughest thing for me. I've noticed ive got a bit worse since the pandemic started,my walking is getting worse. Its quite frustrating.

Thought it was just me that this is happening to. Walking is worse since last year and it's so tough to go anywhere. Increased baclofen and still hasn't done much to help the tin man walking. Little steps and uneven footpaths are not my friend either. Its quite annoying that the pandemic has done this to us.

Hi there, just a quick question how long does it take for lumbar punture results take to come back? I got mine done in cuh and it was being sent to UK! Thank you

Thank you for your feedback, I now presume il hear results when I get another appointment with neurologist, I wasn't too sure if they would contact me before hand if something showed up!

I had LP back in Aug 2020 in CUH ; I was told at time results take at least 6-8 weeks to get sent back to consultant. I had an appointment booked anyway with Consultant in Oct 2020 - results were back for this visit and it was confirm then sadly :(

Hi everyone, does anyone know if vumerity is available in Ireland?

Thanks anyway. I'm hoping to switch from gilenya as apparently vumerity has less side effects than tecfidera. Now the pandemic is over I'm back to constantly being sick (2 months of a bad sinus infection, small break and then I'm sick with a headcold again now). Only now it's more disruptive than ever as I feel like I've to isolate in case it's covid. When I asked about switching a few years ago I was told all the DMTs make you sick all the time but since vumerity has less side effects I was a bit hopeful it might be worth trying. My doctor's don't want me to switch as gilenya's really worked for my Ms, but I'd like to at least try other DMTs in case it's possible to control my MS without being stuck in bed sick with colds so much of the time.

As far as I'm aware you'll need to notify NDLS.

It's one of the medical conditions listed

https://www.ndls.ie/medical-fitness/do-i-need-to-submit-a-medical-report.html#medical-conditions-which-must-be-reported-on-all-applications

"Any other chronic neurological condition such as multiple sclerosis, motor neurone disease, or Huntington’s disease"

I had to but it was straightforward. Handed back my old license with a medical report form from my GP and was given a new license with an endorsement on it I need a medical for renewal.

I didn't have to do anything with my insurance once I had told NDLS.

Thanks so much for that information, it’s really helpful

Question to the audience if I may

Does anyone here have any experience of FES (Functional electrical stimulation).

Asking as two colleagues (MSrs as well) (uk based) have them and while I don't know either very well both were provided via the NHS (at zero cost) and both guys described them as "game changers"

I assume they can be got here privately at your own cost but before I go that route I thought a quick ask here might enlighten me and possibly others

I have an AFO (ankle foot orthotic) which is "good" but the FES sounds so much better.

Any knowledge out there folks?

I went to GP thinking I had back issues/sciatica as I had lower back pain and I had some numbness in my feet and lumbar region. He referred me to A and E for MRI of lumbar as he was concerned that maybe be Cauda equina . thankfully Nothing came back from MRI but my symptoms were progressing - Numbness was travelling up my legs and I was in pain . Really grateful to my GP spotting my symptoms not right as I had back issues before. I luckily got referral to Neuro and managed to get appointment. I had to get Head, T and C spine MRIs and this showed flare up just between shoulder blades - went to hospital for more test etc but in meantime I was lucky as I seem to be recovering from relapse ( took 3- 4 weeks ) without any treatment at that time . Anyway you doing right thing - go to GP and discuss symptoms and take from there. for anything Neuro it is a long process of tests etc before conclusive diagnosis so best start now - best of luck and hopefully you get answers and things go ok !

In my own experience with MS it was more a case of ruling lots of things out as opposed to a definitive test.

This is from mstrust.org.uk

"The key requirement for a diagnosis of MS is evidence of damage to the central nervous system that is disseminated in time and space. This means showing that damage has occurred at different dates (Dissemination in time, or DIT) and to different parts (Dissemination in space, or DIS) of the central nervous system. This distinguishes MS from other neurological conditions."

So at times they might suspect MS but not be able to give a diagnosis until another area of demyelination shows on an MRI. There are certain criteria they have to meet outlined in this article.

https://mstrust.org.uk/a-z/mcdonald-criteria

For me the blood tests were done to rule out things that can cause similar symptoms (vitamin b12 deficiency, Lyme disease, syphilis, HIV) - I had a battery of blood tests to rule out loads of different things. All my bloods came back normal.

Then I had a brain and spine MRI which showed demyelination on the brain and on two parts of the spine. The brain and one spine lesion were old. One was new. This showed that the damage had occurred on two different dates.

My first symptoms were weakness and altered sensation in my right leg. It went away and a few months later I had optic neuritis which is when they started testing for MS.

So I'd had two separate relapses with two completely different sets of symptoms. I had more than two areas of damage on the MRI which occurred at different times. So I didn't need a lumbar puncture to confirm the diagnosis. Some people do.