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MS in all its glory

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    #2642
    fungie
    Registered Users Posts: 688 ✭✭✭fungie


    ladyella wrote: »
    Hi All, mind if I jump in?
    I'm being seen in the ms clinic in St Vincent's now after getting optic neuritis in January. Sudden, severe vision loss in one eye meant 3 days iv steroids followed by 3 months steroids at home. A first mri showed just 1 lesion and the consultant in Vincent's called my diagnosis a CIS. Then a lumbar showed oligoclonal bands and I've to have another mri next month followed by a consultant appt in August. I feel like I'm in complete limbo because no one will tell me what happened or what's wrong with me.
    My eyesight hasn't returned to normal and gets worse with exercise but calms down once I cool down. In the last 2 weeks I've woken up twice with pins and needles in my arm and get hit randomly with tiredness I didn't experience with newborns.
    Am I right to set myself up for an ms diagnosis? I nearly don't mind now because it would just mean I might get answers

    General CIS will lead to a MS diagnosis but not always. I had mild symptoms, small lesion was found and pos lumbar puncture but wasn't enough for a diagnosis at the time. Luckily my symptoms went away after a few days with no treatment and none since. This was 8 years ago and neurologist says I'm becoming an outlier in terms of length with cis. Unless I start getting lots of lesions on MRI or symptoms appear, I'll stay as CIS. Even if minor changes on MRI appear but no symptoms it probably won't change.

    My point is that no point getting hung up on formal diagnosis until it happens because it might not or could be a long time.


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    #2643
    cj maxx
    Registered Users Posts: 13,508 ✭✭✭✭cj maxx


    Lollipops23 wrote: »
    Is it possible your MS could be starting to affect your driving?

    I'm all for not going down without a fight, but when it comes to getting behind the wheel there's no room for stubbornness (where I find it otherwise serves me well!). There's too much at risk on the road.

    No. But now you mention it i was fiddling with the air-con in the car. Maybe i weaved doing that.( slowly in traffic)I hadn't thought of it


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    #2644
    Lollipops23
    Registered Users Posts: 5,420 ✭✭✭Lollipops23


    cj maxx wrote: »
    No. But now you mention it i was fiddling with the air-con in the car. Maybe i weaved doing that.( slowly in traffic)I hadn't thought of it

    Lol I will freely admit to be a CRAP driver (loooong before MS was ever in the picture), so I can see myself doing that!!

    Have you any idea who's being try to shop you to the gardai? Could you have a chat with them and let them know that you see a neurologist frequently? They make me do a range of coordination and balance tests every year to make sure I haven't decompensated since my last visit, and I assume that would include my driving abilities.


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    #2645
    cj maxx
    Registered Users Posts: 13,508 ✭✭✭✭cj maxx


    Lollipops23 wrote: »
    Lol I will freely admit to be a CRAP driver (loooong before MS was ever in the picture), so I can see myself doing that!!

    Have you any idea who's being try to shop you to the gardai? Could you have a chat with them and let them know that you see a neurologist frequently? They make me do a range of coordination and balance tests every year to make sure I haven't decompensated since my last visit, and I assume that would include my driving abilities.

    The 1st time was from a off licence. Liverpool were playing the 1st cl game after the Karius final , so I made a night of it ,an Indian and 4 beers. Fair enough coming from an off-licence .
    The 3rd time was a delivery driver who parked his lorry in front of the local shop meaning I had to go to the off licence for smokes, again fair enough.
    The rest of the time I've no idea who rang them. Neighbours i suspect.


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    #2646
    Lollipops23
    Registered Users Posts: 5,420 ✭✭✭Lollipops23


    cj maxx wrote: »
    The 1st time was from a off licence. Liverpool were playing the 1st cl game after the Karius final , so I made a night of it ,an Indian and 4 beers. Fair enough coming from an off-licence .
    The 3rd time was a delivery driver who parked his lorry in front of the local shop meaning I had to go to the off licence for smokes, again fair enough.
    The rest of the time I've no idea who rang them. Neighbours i suspect.

    Do you walk with a pronounced limp?


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    #2647
    cj maxx
    Registered Users Posts: 13,508 ✭✭✭✭cj maxx


    Lollipops23 wrote: »
    Do you walk with a pronounced limp?

    Yeah. Bouncers on pub doors , supermarket security ( even checkout staff) and gardai have mistaken me for drunk walking.
    Its trivially annoying when there's no smell of drink and I can speak intelligently (somewhat :) ), but more so if I was out for a few and I smell of alcohol . I was given these cards by the MS soc for that very reason and if I need the toilet etc, but bouncers don't give a damn.


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    #2648
    GTE
    Registered Users Posts: 3,909 ✭✭✭GTE


    Hi all, I can't seem to find the search forum feature on the new Boards. I was wondering if anyone had any stories about obtaining mortgage protection insurance while having MS. It's a worry for us as my partner has MS, but very very mild. Diagnosed 5 years ago and no relapse or symptoms since, other than some tiredness.


    We know of the specialist mortgage protection providers but it will be a long weekend until we find out from them as we are worried this will screw up our mortgage.



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    #2649
    adam88
    Registered Users Posts: 1,599 ✭✭✭adam88


    https://www.boards.ie/discussion/comment/117656569#Comment_117656569

    Hi, it’s a bit difficult getting it but it can be got from the specialist providers. Worse case scenario most banks will allow the mortgage be drawn down once tou get two refusals. It’s just a danger if something should happen the other side isn’t protected financially



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    #2650
    bookworms
    Registered Users Posts: 147 ✭✭bookworms


    Just another question on mortgage insurance. My husband and I have a mortgage, and the life insurance with the last 10 years. I have been diagnosed recently. Should I notify the insurers?



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    #2651
    adam88
    Registered Users Posts: 1,599 ✭✭✭adam88


    https://www.boards.ie/discussion/comment/117663410#Comment_117663410

    Doesn’t matter. That’s the risk they took when giving ye the policy. You’ll need to advise car insurance company tho



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    #2652
    bookworms
    Registered Users Posts: 147 ✭✭bookworms


    Thanks Adam, car insurance and driving license amended. Wasn't sure about mortgage protection. Appreciate your help



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    #2653
    whatever76
    Registered Users Posts: 1,008 ✭✭✭whatever76


    Hey - whats the best process for going to see Physical therapist that would have experience with MS patients ? Just noticing some stiffness when walking esp in Mornings so just want to seek advice on it and some exercises . GP referral or can you arrange one privately ? If privately any recommendations of a PT in Cork area with MS patient experience ?



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    #2654
    adam88
    Registered Users Posts: 1,599 ✭✭✭adam88


    https://www.boards.ie/discussion/comment/117742511#Comment_117742511

    I’m interested in any response to this question



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    #2655
    cj maxx
    Registered Users Posts: 13,508 ✭✭✭✭cj maxx


    Try MS Ireland to see if they can refer you. I think it was they who referred me to a PT



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    #2656
    whatever76
    Registered Users Posts: 1,008 ✭✭✭whatever76


    Selma Blair says she is 'in remission' from MS (rte.ie)



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    #2657
    byhookorbycrook
    Moderators, Education Moderators, Regional South East Moderators Posts: 12,482 Mod ✭✭✭✭byhookorbycrook


    https://www.boards.ie/discussion/comment/117765719#Comment_117765719

    I know two people who have had it. Some of the groups on FB are quite aggressive if you ask about long term prognosis and those who it fails. Like Lemtrada, I think it's more successful the earlier you have it .



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    #2658
    whatever76
    Registered Users Posts: 1,008 ✭✭✭whatever76


    https://www.boards.ie/discussion/comment/117767919#Comment_117767919

    Wow that's Interesting , and how are the people doing ? I am not sure I be brave enough to go through the treatment



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    #2659
    cj maxx
    Registered Users Posts: 13,508 ✭✭✭✭cj maxx


    I looked into it 5/6 years ago but wasn't in a position to try it. I didn't have the 60K or time. Russia and Mexico were the the two main places I see clinics for it.



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    #2660
    byhookorbycrook
    Moderators, Education Moderators, Regional South East Moderators Posts: 12,482 Mod ✭✭✭✭byhookorbycrook


    https://www.boards.ie/discussion/comment/117769379#Comment_117769379

    One is doing well, but she was very quick to get it after diagnosis. Another was quite " advanced" MS wise and didn't feel they had any option than to try it. Both paid for under the Patient Treatment Fund and got it in England.



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    #2661
    MyAccount
    Registered Users Posts: 58 ✭✭MyAccount


    https://www.boards.ie/discussion/comment/117742511#Comment_117742511

    Hi,


    Pre-Covid I used to attend a Neuro-PT in Dublin. (Not too far (maybe an hour) from home). They were recommended by my Neurologist. The PT didn't need anything but did seek a report from the Neurologist. I found them good. It's hard work but there was a noticeable improvement in my symptoms. Not cheap though. (Also was "homework"). I stopped going last year / during lockdown and for personal reasons (I lost my younger brother last year) so I was too scared to go back. With all that went on I also got lazy and stopped doing the "homework" Stupidly in hindsight.


    Unfortunately I have had a number of definite / more pronounced issues in recent times so after a bit of pushing the neuro agreed to a face to face consultation yesterday (yet another bill!) on foot of which he's bringing me in to hospital next week "to investigate further". Also changing meds to Gilenya from next week.

    Post edited by MyAccount on


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    #2662
    cj maxx
    Registered Users Posts: 13,508 ✭✭✭✭cj maxx


    https://www.boards.ie/discussion/comment/117772938#Comment_117772938

    How does the Payment Treatment Fund work ?. I'm in NI so will there be a chance of getting it done on the NHS? Even though I think if I had it 5/6 years ago it would be worth it as mobility has gone down hill in that time. :(



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    #2663
    byhookorbycrook
    Moderators, Education Moderators, Regional South East Moderators Posts: 12,482 Mod ✭✭✭✭byhookorbycrook


    https://www.boards.ie/discussion/comment/117789299#Comment_117789299

    You should probably join the FB group as it’s mainly geared to the Uk.

    Search UK HSCT , it’s a private group.



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    #2664
    cj maxx
    Registered Users Posts: 13,508 ✭✭✭✭cj maxx


    https://www.boards.ie/discussion/comment/117790913#Comment_117790913

    I'm in it ,I think,



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    #2665
    stevie84
    Registered Users Posts: 8 ✭stevie84


    Hey, I've been lurking for awhile. First post so be gentle 😊 I was officially diagnosed with RRMS in 2017, I had symptoms from September 2016. I went through hell at the time and I've struggled with a lot of anxiety since. I had MS symptoms for about 10 years before being diagnosed and experienced fatigue and unusual symptoms since I was a child. I've had a lot of gaslightling from the medical profession over the years and have by and large found GPs are not very knowledgeable or empathetic about MS.

    Up to March 2019 I was working full-time in Public Service job in a large office. While trying to hold down a full-time job there were a lot of times I felt really unwell, fatigue, chronic migraine, pain and severe anxiety. I constantly pushed through at my own detriment. Since March 2019 I have worked remotely at home, I am busier than ever and working long hours but working from home has given me the opportunity to manage pain, other symptoms and my anxiety better. I don't feel I have to be "on" all the time and can just cope better at home with how I feel. I also save energy not commuting, being around people all day and being out of my environment.

    I was wondering how others with MS manage with work and their employer. Especially those who have been working remotely during the pandemic and are only be called back to the office from next week. I understand there are people who have been working all through the pandemic, which I have huge respect for but for those who had the opportunity to work remotely how are you navigating the return to the office and have you requested to stay working at home? I would like to keep working remotely full-time but I am really not sure how to push for this and feel I will have to look for another job if I want to stay working from home 😔

    I am also very anxious about returning to the office, I am vaccinated but being honest I am still worried about getting the virus and having any additional health complications on top of MS.

    I was glad to see MS Ireland published something about this last week https://www.ms-society.ie/understanding-ms-work as my employer is not being very empathetic and doesn't really have an understanding of MS I feel. I feel very isolated and alone in everything MS related. Is anyone else dealing with similar issues?



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    #2666
    cj maxx
    Registered Users Posts: 13,508 ✭✭✭✭cj maxx


    https://www.boards.ie/discussion/comment/117909733#Comment_117909733

    I can't help you re employers, but I can completely relate to having symptoms at a young age. If no-one here has advice I'd recommend seeing a specialist employment solicitor, just to cross your t's and dot your i's regarding work.



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    #2667
    Nigel Fairservice
    Registered Users, Moderators, Regional Abroad Moderators Posts: 2,189 Mod ✭✭✭✭Nigel Fairservice


    https://www.boards.ie/discussion/comment/117909733#Comment_117909733

    I have popped in and out of the office when needed over the last year and a half but I'm heading back into the office next week for a day before gradually increasing days. I don't think everyone will be in at the same time for now and social distancing will still be in place so hopefully Covid will not be a problem... hopefully. Having said that I would like to continue working from home because as you said I feel I'm better able to manage my MS, especially the smaller things. For example, in the office I could visit the toilet 10 times before lunch and it was something I was self conscious of. At home I didn't care. If I needed to go then I just went. My fatigue was a lot better as well and I could do more to help myself in the heat with fans going and windows open. I didn't have to worry that I would be annoying my colleagues with these things.

    My employer is good for time off for appointments and scans and all that but I'm not really sure they have much understanding of the illness, range of symptoms and how the illness presents differently in different people. Right now I think it's a bit early to predict how things will go with the return to the office and will adopt a wait and see approach for now.

    Post edited by Nigel Fairservice on


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    #2668
    cj maxx
    Registered Users Posts: 13,508 ✭✭✭✭cj maxx


    Anyone here on lemtrada or Ocrevus ? Any advice about it or pros and cons ?

    Post edited by cj maxx on


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    #2669
    stevie84
    Registered Users Posts: 8 ✭stevie84


    https://www.boards.ie/discussion/comment/117910863#Comment_117910863

    Yes, being finally diagnosed can explain a lot of what's gone before. Thanks so much for the advice.



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    #2670
    stevie84
    Registered Users Posts: 8 ✭stevie84


    https://www.boards.ie/discussion/comment/117911127#Comment_117911127

    Thanks so much for your reply. Yes, I have been in the lucky position to be fully working at home for the last 18 months and I'm the same as yourself it's helped me manage better on all fronts.

    Our office is returning on a phased basis too but the guidelines and procedures are a little sketchy even though it's a Government building! I guess not knowing who is vaccinated, if people really will stay out of the office if they're sick and the fact social distancing and mask wearing in certain places will not be a requirement from October I am pretty concerned especially going into flu season.

    I think I would just rather wait and see while working from home 😊



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    #2671
    byhookorbycrook
    Moderators, Education Moderators, Regional South East Moderators Posts: 12,482 Mod ✭✭✭✭byhookorbycrook


    https://www.boards.ie/discussion/comment/117911129#Comment_117911129

    I'm not sure if Lemtrada is being given at the moment. It was pulled for a while. I know 2 people on Ocre and they seem to tolerate it well.

    Stevie, welcome to the gang, though obviously no-one wants to be a part of it.What treatment are you on?I'm on Tysabri , which makes me more prone to infection which isn't ideal when you are a primary teacher working with unmasked children with additional needs some of whose cough etiquette, hand hygiene and social distancing is poor, at best. (That's not down to the additional needs, 6 year olds aren't generally models of hygiene!)

    I bought a HEPA filter for my classroom (from my own funds) and wear a KN95 mask at all times. Our staff room has no more than 7 people there at a time, we have allocated places and use our own cutlery, coffee etc. We wipe anything we touch and with staggered breaks etc. the longest anyone is in there is 20 minutes tops. We wear masks moving around in the room and only remove them to eat or drink.

    The staff are aware of my diagnosis . I fell in the corridor last week and got badly bruised- staff know that I ask for help if I need it , but pride literally came before a fall. On the plus side, I ended up with some rather impressive bruises, which really impressed the small people. Bruises are even better than blood in the eyes of a senior infant. Talk to your boss, Stevie, outline what you feel you need and see how it goes. MS Ireland will be very helpful with advice on how you can advocate. The very best of luck.



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