MS in all its glory

Nigel Fairservice

Interesting article suggesting a link between MS and the Epstein-Barr Virus. Most people won't even know they have it but the Epstein-Barr Virus can manifest itself in some people as glandular fever. I had a very bad case of glandular fever as a child.

https://www.irishexaminer.com/lifestyle/healthandwellbeing/arid-40794720.html?fbclid=IwAR3CJcoCo2Dqkrx8GtarKASD2ryP80Qnw97HrUIsYdj1LVkzv-chPxkCRJk

Nigel Fairservice

https://www.boards.ie/discussion/comment/118543990#Comment_118543990

I had my lumbar puncture in CUH and I didn't find out the result of it for 7 months. I wasn't very proactive in finding out the result though.

debskc

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!

Crunchy Friends

https://www.boards.ie/discussion/comment/118561439#Comment_118561439

I had my in St. Vincent's but just to confirm I got the results at the next neurologist appointment, which was the appointment at which I received my diagnosis.

Nigel Fairservice

https://www.boards.ie/discussion/comment/118561439#Comment_118561439

Most likely. That's what happened in my case. I had MRIs, lumbar puncture and evoked potentials tests when I was first admitted to CUH. At the time they told me I might have MS but they couldn't say for sure. I didn't find out the results of the tests until I saw the neurologist again 7 months later.

Salmotrutta

https://www.boards.ie/discussion/comment/118560741#Comment_118560741

Think it's been suspected for years but this is the first time a large study has found a definite link. I had a severe case of glandular fever when I was 22, spent a week in hospital. Maybe a bad case is the immune system over reacting and that kicks off the auto immunity in MS...

whatever76

https://www.boards.ie/discussion/comment/118543990#Comment_118543990

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 :(

toffeeshel

Hi. I got diagnosed with primary progressive MS in December. I wear a Dictus brace for walking. I can walk a couple of hundred metres before needing to rest. I am visiting my GP this evening to ask him to sign the form for a parking permit. How bad do I have to be to qualify? Should I ask him to say that I use a stick? We go to a lot of sports matches where being able to park close to the venue would make a huge difference to me. Thanks

cj maxx

https://www.boards.ie/discussion/comment/118560741#Comment_118560741

I remember reading about that years ago. An interesting read. Both times I've been hospitalised, 30 odd years ago and about 10 tears ago , I was treated with antivirals for viral meningitis.

byhookorbycrook

https://www.boards.ie/discussion/comment/118574012#Comment_118574012

Sorry you are PMS, the permit is literally a tick the box, I'm hoping your GP ticked the right one. I hear you on needing to park close by.

sqooka

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

cj maxx

https://www.boards.ie/discussion/comment/118771846#Comment_118771846

Sorry , I've no idea. But I'm pretty sure Tecfidera is. I was thinking of it till flushing was mentioned. I have a red face already 🥵

sqooka

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.

byhookorbycrook

I'm on Tysabri and it's certainly not true that it makes me sick all of the time! I get the odd UTI and respiratory tract infections but as a general rule feel pretty well on it.I'm a primary teacher who works in special education and as you can imagine, am exposed to every single bug going. If you are getting ill regularly, your neuro. needs to consider why.

byhookorbycrook

Had a neuro-physio assessment this week. Not good . Exercises are pretty hard going, but I’d recommend that any MS people do an assessment. I had unconsciously been avoiding things that I struggled with which had a knock on effect in other areas . Example - walking quickly and looking from side to side . At work , I had told kids to walk in front of me as they would be quicker than me - but part of that was obviously that I couldn’t do the side by side thing .

Use it or lose it !

cj maxx

https://www.boards.ie/discussion/comment/118840241#Comment_118840241

It's a bit like I started to use my left foot and hand to do things as its so much stronger. Lost all strength in my dominant right side.

After a MRI, head and spine, as I was complaining about mobility. Let's see what it shows up , but I think being housebound with children during lockdown was a major factor in my mobility issues.

GBX

I've just been diagnosed with having MS. I had issues with my eyesight and balance a few weeks back. I ended up being admitted to Tallaght. Had MRI's of brain and spine and a lumbar puncture of the spine. Was released within 2 days while I waited on the final results. Last Friday I had an appointment with the neurologist and while I went in feeling better than I had in recent weeks, he confirmed that I do indeed have relapsing MS. The balance issue is still there but the double vision has passed for now.

It was/is still a shock with the diagnosis but I'm thankful it can be managed with treatment I'm 42 and the Neurologist believes I can live a long and happy life without compromising the things I enjoy. I'm likely to go with Kesimpta. The idea of a single injection administered myself rather than the tablet options is something I'm ok with. Kesimpta would be quicker to get going than the tablet option (the name escapes me) I'm anxious to begin sooner rather than later. it but will obviously have to wait for the long term illness benefit to be approved. Hopefully that doesn't take too long.

Its a surreal feeling knowing I will have this as part of me forever but it could have been worse and I'm thankful of that.

cj maxx

I'm looking to change from Avonex as I think it's stopped working. Kesimpta looks good as it's once a week.

byhookorbycrook

https://www.boards.ie/discussion/comment/119054185#Comment_119054185

Sorry to hear your are in the MS gang now, GBX. Your dmd isn't always done through the LTI, when I was injecting it was through the high tech drug programme, but either way, sooner is good!

Avonex is, frankly, pants. Everyone needs to be put on the highly effective DMDs from Day 1 (see link) I had no choice but Betaferon/Avonex when I was diagnosed and I know that damage done then has caused me to be deteriorating now. (It's proven that damage early on is going to bite back after a while) I can't understand when any Neuro wouldn't push for an MS-er to get the good ones these days.

https://mstrust.org.uk/about-ms/ms-treatments/ms-decisions-aid

GBX

I queried it with my Neurologist about driving, they said I'm fine to drive and I don't need any changes to my license as my symptoms are manageable. He said maybe contact my insurance company to inform them, which I did. Will I still need to inform the NLDS if there are no changes to my license or would it only apply if my MS gets worse and I need it on my license.

TIA.

CivilCybil

https://www.boards.ie/discussion/comment/119111556#Comment_119111556

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.

whatever76

+1 to CivilCybil ; NDLS need to know, and license updated with a code . GP signs off report to say you are fit to drive for x years. I did not say anything to Insurance.

cj maxx

https://www.boards.ie/discussion/comment/119073201#Comment_119073201

Had a look at that link, but only now and I've F-ed up and ordered a new script of them that will last a while.

Think I'd try Kesimpa ? If it's available here ,nI

Frack

Hi - just looking for some advice if possible. My partner was diagnosed in Dec 2021 with relapsing remitting MS. She was told it was a middle of the road case and was put on Tysabri. She is cared for in Vincent’s hospital (who in my opinion have been absolutely fantastic)

Unfortunetly due to having covid, she missed her 6 month consultation last week to assess her 2nd MRI (taken in March I think). She had been told the next available slot is next December now

My question is - have any more experienced MS folk ever went to a private consultant to compliment the public service in this sort of situation? Or do you think she has been triaged as they had a glance at the charts and nothing dramatic had changed? I don’t want to upset her care in Vincent’s either as they have been so so good and must be under a lot of pressure

Carrie6OD

If she’s doing ok and it’s just an annual appointment she should be fine to wait til December. My MRIs are done privately and get sent directly to the team in Vincents and they contact me if they need to. So if I don’t hear from them it’s good! A quick email in to the wonderful MS nurses might help her get some reassurance about her MRI. I was seeing a private neurologist as well but found it had no benefit so switched all care to Vincent’s.

Nigel Fairservice

https://www.boards.ie/discussion/comment/119265684#Comment_119265684

When I see my neurologist after having my MRIs they barely even mention the MRI. I take that to be a good sign. I think if there was was something very wrong or worrying they would bring your partner in quicker than December.

Frack

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

MyAccount

Just to echo the above posts.

I was diagnosed with RRMS in very early 2015; and have only ever seen my Neurologist privately; mostly due to initial (severe) anxiety on my part in the early days / years (and then inertia on my part in later years).

As one of the previous posters said the MRIs in general are barely mentioned (to paraphrase he normally merely says "no change"). The only time my MRI changed was last year but I had seen a marked deterioration in my symptoms so that wasn't really a surprise.

Basically therefore what I am saying (but I am not a doctor) is that in my experience unless there's other stuff going on the MRIs are unlikely to be an issue ( at least that's my non educated opinion).

Hopefully that helps.

MyAccount

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?

Frack

Thanks for that, much appreciated