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MS in all its glory

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    #2402
    Nigel Fairservice
    Registered Users, Moderators, Regional Abroad Moderators Posts: 2,175 Mod ✭✭✭✭Nigel Fairservice


    Carrie6OD wrote: »
    Does stress affect your MS? I’m stressed to the max at the moment with the school return (teacher) and can barely put one foot in front of the other.

    My neurologist told me to avoid stress where I could. Easier said than done.


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    #2403
    MyAccount
    Registered Users Posts: 58 ✭✭MyAccount


    Same as Nigel says, my Neurologist, and GP, who I trust implicitly (having been a patient in different guises for 25 years) both say to avoid stress. I would if I could ðŸ˜႒

    But I know 100% I am so much better when I can keep life on an even keel. We are all different but good quality sleep / rest or lack of same makes a huge difference for me. The problem of course is when I have too much in my head I don't sleep well. This of course stresses me out and sometimes I feel trapped in an ever decreasing circles etc etc .....

    The whole Covid thing was stressful including worry about my.Mam and Dad, who while very active are no spring chickens, and for a while early on in the lockdown we're not in a great place. This and other family related worries dont help. ( it4 am and I am online!)

    But in summary in my uneducated opinion stress doesn't help. For me though staying physically active and eating well helps, or at least it does in my opinion.


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    #2404
    cj maxx
    Registered Users Posts: 13,354 ✭✭✭✭cj maxx


    I’ve been on Avonex since 2013 , and never really had problems with it, but my last 2 injections have been quite painful, also leaving my leg kind of stiff and sore. Anyone have the same experience with Avonex ?


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    #2405
    byhookorbycrook
    Moderators, Education Moderators, Regional South East Moderators Posts: 12,475 Mod ✭✭✭✭byhookorbycrook


    It may not be the Avonex , but rather increased MS pain. Best to check with your neuro/nurse however.


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    #2406
    MyAccount
    Registered Users Posts: 58 ✭✭MyAccount


    Not sure if this line of questioning is viewed as acceptable, or if viewed as inappropriate or offensive, in which case I apologise in advance, but i have no one to ask who might understand, and my Neuro just brushes me off, everytime I attempt to raise the question (despite charging €200 for a 5 minute consultation :( )

    Anyway Q is, one for the ladies. It may be entirely in my mind, but does anyone find their symptoms are worse, (in my case particularly fatigue and my annoying drop foot) at certain times of the month?


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    #2407
    whatever76
    Registered Users Posts: 1,007 ✭✭✭whatever76


    Anyone here on Tecfidera ? Currently researching it - how have the side effects been etc ?


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    #2408
    Carrie6OD
    Registered Users Posts: 324 ✭✭Carrie6OD


    MyAccount wrote: »
    Not sure if this line of questioning is viewed as acceptable, or if viewed as inappropriate or offensive, in which case I apologise in advance, but i have no one to ask who might understand, and my Neuro just brushes me off, everytime I attempt to raise the question (despite charging €200 for a 5 minute consultation :( )

    Anyway Q is, one for the ladies. It may be entirely in my mind, but does anyone find their symptoms are worse, (in my case particularly fatigue and my annoying drop foot) at certain times of the month?


    Yes! Absolutely 100%! My foot drop is chronic around that time of the month. I figured it out because I kept an MS symptom diary for 6 months and I could pinpoint the days when my walking was just shocking and it was at roughly the same time every month. My MS nurse (who is 10 times better than my Neuro) said that i wasn’t the first to say it to her. I have PPMS and so the walking is my biggest issue and I’ve to be extra careful around that time.


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    #2409
    Carrie6OD
    Registered Users Posts: 324 ✭✭Carrie6OD


    whatever76 wrote: »
    Anyone here on Tecfidera ? Currently researching it - how have the side effects been etc ?

    I am not on tecfidera but there’s an instagram account MSMum3 who is on it and she speaks about it quite frequently


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    #2410
    whatever76
    Registered Users Posts: 1,007 ✭✭✭whatever76


    Carrie6OD wrote: »
    I am not on tecfidera but there’s an instagram account MSMum3 who is on it and she speaks about it quite frequently

    Oh thank you ! I will look her up ... much appreciated.:o


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    #2411
    Nigel Fairservice
    Registered Users, Moderators, Regional Abroad Moderators Posts: 2,175 Mod ✭✭✭✭Nigel Fairservice


    whatever76 wrote: »
    Anyone here on Tecfidera ? Currently researching it - how have the side effects been etc ?

    I'm on Tecfidera. The only side effects I have noticed are to do with my skin.

    My cheeks burn badly sometimes. It feels like when your cheeks go red from embarrassment but more intensely. That one isn't too uncomfortable.

    The medication also makes me feel like I'm wearing a scratchy wooly jumper all over my body at times, mostly at night. Clothes, bed sheets and duvet covers rubbing off my body set it off. It can last a few hours and can be sightly uncomfortable. I try to lie very still when it happens.

    These things only happen every so often, there's no rhythm to them at all. They're only minor issues I suppose. I happy with the medication overall.


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    #2412
    whatever76
    Registered Users Posts: 1,007 ✭✭✭whatever76


    Nigel Fairservice wrote: »
    I'm on Tecfidera. The only side effects I have noticed are to do with my skin.

    My cheeks burn badly sometimes. It feels like when your cheeks go red from embarrassment but more intensely. That one isn't too uncomfortable.

    The medication also makes me feel like I'm wearing a scratchy wooly jumper all over my body at times, mostly at night. Clothes, bed sheets and duvet covers rubbing off my body set it off. It can last a few hours and can be sightly uncomfortable. I try to lie very still when it happens.

    These things only happen every so often, there's no rhythm to them at all. They're only minor issues I suppose. I happy with the medication overall.

    thank you Nigel - that's really helpful. I've been reading up on Flushing side effect so interesting in hearing peoples experience as it can vary so much. I am recently diagnosed :( so a bit overwhelmed at the minute.


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    #2413
    MyAccount
    Registered Users Posts: 58 ✭✭MyAccount


    Carrie6OD wrote: »
    Yes! Absolutely 100%! My foot drop is chronic around that time of the month. I figured it out because I kept an MS symptom diary for 6 months and I could pinpoint the days when my walking was just shocking and it was at roughly the same time every month. My MS nurse (who is 10 times better than my Neuro) said that i wasn’t the first to say it to her. I have PPMS and so the walking is my biggest issue and I’ve to be extra careful around that time.

    Thanks Carrie,

    Not that is "good to hear" but as the Freddie Mercury song says, I was starting to think "I was going slightly mad". At the risk of again sounding mad, or selfish, not that I wish anything on anybody but, if this makes sense, I am glad I am not alone. I have RRMS, and while overall it's been a while since my last relapse, I have some residual issues, which I'm told are result of nerve damage, but which are by and large manageable most of the time, but which fluctuate, as said.

    I don't have a nurse, my Neuro (based in a well known Private Hospital/ Clinic in an affluent part of South Co Dublin), tells me they don't have one. You are not the first person I have heard praising their nurse. I might raise it again, as I sometimes am made to feel a nuisance by my Neuro, despite the fact that he charges handsomely for even the smallest of things. I had to pay €50 recently to get a stamp on my driving license renewal, despite the fact it took over 5 weeks to return the form!

    I would be interested to know if others have a nurse? That said my GP is fantastic but since March has been almost impossible to get hold of, but by all accounts that is the same across the board.


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    #2414
    Loveinapril
    Registered Users Posts: 2,326 ✭✭✭Loveinapril


    I am on Tecfidera too. I get that "flushing" but it is more like sunburn for me. My cheeks, neck, chest go red and feel sunburnt and my arms can get quite itchy. It happens badly enough for me to take an asprin a couple of times a week and might last for two hours. It is usually about 5 or 6 hours after I take the tablets, so lunch time or the middle of the night. I wouldn't wake up but if I wake with my daughter it can be hard to get back asleep.

    It is managing my MS really well. I am on it on and off (pregnancies) for three years and have really noticed an improvement in my day to day living so I can deal with the side effects.


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    #2415
    whatever76
    Registered Users Posts: 1,007 ✭✭✭whatever76


    Loveinapril wrote: »
    I am on Tecfidera too. I get that "flushing" but it is more like sunburn for me. My cheeks, neck, chest go red and feel sunburnt and my arms can get quite itchy. It happens badly enough for me to take an asprin a couple of times a week and might last for two hours. It is usually about 5 or 6 hours after I take the tablets, so lunch time or the middle of the night. I wouldn't wake up but if I wake with my daughter it can be hard to get back asleep.

    It is managing my MS really well. I am on it on and off (pregnancies) for three years and have really noticed an improvement in my day to day living so I can deal with the side effects.

    thanks LoveinApril for sharing .... the flushing side effect is one I most concerned about . Its great hearing experience the balance of how the medications is working v's living with the side effect. I am just recently diagnosed so doing as much research as I can before deciding . thx again !


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    #2416
    Loveinapril
    Registered Users Posts: 2,326 ✭✭✭Loveinapril


    whatever76 wrote: »
    thanks LoveinApril for sharing .... the flushing side effect is one I most concerned about . Its great hearing experience the balance of how the medications is working v's living with the side effect. I am just recently diagnosed so doing as much research as I can before deciding . thx again !

    The start is such a scary time so doing research is the best way to manage. When I moved off Copaxone, I was offered Tecfidera or Gilenya but I didn't like the idea of the Gilenya messing with my heart rate. Sensory skin issues seemed like the lesser of two evils.


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    #2417
    adam88
    Registered Users Posts: 1,599 ✭✭✭adam88


    Loveinapril wrote: »
    The start is such a scary time so doing research is the best way to manage. When I moved off Copaxone, I was offered Tecfidera or Gilenya but I didn't like the idea of the Gilenya messing with my heart rate. Sensory skin issues seemed like the lesser of two evils.

    Gilenya only affects the heart rate for a few hours and even at that only barely for the vast majority of people


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    #2418
    Lollipops23
    Registered Users Posts: 5,420 ✭✭✭Lollipops23


    adam88 wrote: »
    Gilenya only affects the heart rate for a few hours and even at that only barely for the vast majority of people

    I was only the 2nd patient my nurse had seen whose heart rate remained totally unchanged :cool:


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    #2419
    adam88
    Registered Users Posts: 1,599 ✭✭✭adam88


    Lollipops23 wrote: »
    I was only the 2nd patient my nurse had seen whose heart rate remained totally unchanged :cool:

    Mine went from 80 to 65-70. Not exactly alarming


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    #2420
    adam88
    Registered Users Posts: 1,599 ✭✭✭adam88


    Anyone experiencing pain/sense of swelling in one of their eyes??? Having awful pain in my eye and a feeling it’s swollen. If I rub it it sorts of goes away. My initial MS attack was optic neuritis. Just afraid I’m having a flare up. Trying to get through to anyone on my neuro team is next to impossible.


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    #2421
    murfilein
    Registered Users Posts: 539 ✭✭✭murfilein


    adam88 wrote: »
    Anyone experiencing pain/sense of swelling in one of their eyes??? Having awful pain in my eye and a feeling it’s swollen. If I rub it it sorts of goes away. My initial MS attack was optic neuritis. Just afraid I’m having a flare up. Trying to get through to anyone on my neuro team is next to impossible.

    my ms also started with optic issues, but i never experienced eye pain, even with more severe relapses. yeah trying to get through to the neuro can be a PITA

    anyone has experience with sativex? is that even available in ireland?


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    #2422
    Carrie6OD
    Registered Users Posts: 324 ✭✭Carrie6OD


    adam88 wrote: »
    Anyone experiencing pain/sense of swelling in one of their eyes??? Having awful pain in my eye and a feeling it’s swollen. If I rub it it sorts of goes away. My initial MS attack was optic neuritis. Just afraid I’m having a flare up. Trying to get through to anyone on my neuro team is next to impossible.

    Yes I have had that pain. Of course you’d should see the doctor if you’re concerned but mine went away after a day. I have PPMS though and don’t have flare ups so I’m not sure what it was but it’s as very uncomfortable at the time.


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    #2423
    Lollipops23
    Registered Users Posts: 5,420 ✭✭✭Lollipops23


    adam88 wrote: »
    Anyone experiencing pain/sense of swelling in one of their eyes??? Having awful pain in my eye and a feeling it’s swollen. If I rub it it sorts of goes away. My initial MS attack was optic neuritis. Just afraid I’m having a flare up. Trying to get through to anyone on my neuro team is next to impossible.

    I had optic neuritis and it felt like I'd pulled a muscle in my eyeball or something! It went away by itself after about 2 weeks if memory serves.


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    #2424
    adam88
    Registered Users Posts: 1,599 ✭✭✭adam88


    Lollipops23 wrote: »
    I had optic neuritis and it felt like I'd pulled a muscle in my eyeball or something! It went away by itself after about 2 weeks if memory serves.

    Pain and that feeling settled down today. If I’m tired it can be very bothersome


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    #2425
    Arllwysiad
    Registered Users Posts: 2 ✭Arllwysiad


    How does MS care 'work' in Ireland and how much does it cost? I'm an Irish citizen living in the UK but I'm getting increasingly horrified by this country and wonder if the NHS will even exist in a few years. I'm wondering if things would be better in Ireland.


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    #2426
    Loveinapril
    Registered Users Posts: 2,326 ✭✭✭Loveinapril


    I am a public patient and have never had to spend a cent for my MS in hospital. MS qualifies you for the Longterm Illness scheme so all medication is covered for you. It also covers somewhat related medications like antidepressants, anti anxiety meds, specific vitamins, anti biotics etc. I see my consultant team once every 6 months, get blood tests and get MRIs every year or two, depending on how I am.


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    #2427
    Arllwysiad
    Registered Users Posts: 2 ✭Arllwysiad


    Loveinapril wrote: »
    I am a public patient and have never had to spend a cent for my MS in hospital. MS qualifies you for the Longterm Illness scheme so all medication is covered for you. It also covers somewhat related medications like antidepressants, anti anxiety meds, specific vitamins, anti biotics etc. I see my consultant team once every 6 months, get blood tests and get MRIs every year or two, depending on how I am.
    Ah, sounds great! Thanks for your reply. It's good to know that MS won't be an issue if I have to escape the UK. :D


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    #2428
    Carrie6OD
    Registered Users Posts: 324 ✭✭Carrie6OD


    Arllwysiad wrote: »
    Ah, sounds great! Thanks for your reply. It's good to know that MS won't be an issue if I have to escape the UK. :D

    I’ve had the same experience. I was in private care for about a year waiting to get into the public system and once I was in it has been extremely good and all free. Just today I had to email my MS nurse about a possible symptom and she was back to me with advice by return of email. The MS nurses are more valuable (to me) than the neurologist!


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    #2429
    Loveinapril
    Registered Users Posts: 2,326 ✭✭✭Loveinapril


    Carrie6OD wrote: »
    Just today I had to email my MS nurse about a possible symptom and she was back to me with advice by return of email. The MS nurses are more valuable (to me) than the neurologist!

    This is a good point. I am with Beaumont hospital and they have two MS nurses who are available by phone three mornings a week. I might be onto them about getting forms signed, organising prescriptions or appointments or like Carrie, just want to discuss a new possible symptom. I heard that you can take Asprin to combat side effects from one of my medications and I phoned to chat about it and they sent a prescription in the post the following day. They are great!


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    #2430
    Lollipops23
    Registered Users Posts: 5,420 ✭✭✭Lollipops23


    Loveinapril wrote: »
    I am a public patient and have never had to spend a cent for my MS in hospital. MS qualifies you for the Longterm Illness scheme so all medication is covered for you. It also covers somewhat related medications like antidepressants, anti anxiety meds, specific vitamins, anti biotics etc. I see my consultant team once every 6 months, get blood tests and get MRIs every year or two, depending on how I am.

    It doesn't cover my anti anxiety meds? I've been on 50mg of sertraline for 3 years (absolute lifesaver) and it costs about a tenner a month.


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    #2431
    Loveinapril
    Registered Users Posts: 2,326 ✭✭✭Loveinapril


    Lollipops23 wrote: »
    It doesn't cover my anti anxiety meds? I've been on 50mg of sertraline for 3 years (absolute lifesaver) and it costs about a tenner a month.

    It covers my Sertraline and has done for years. Have a chat with your pharmacist. I had a pharmacist who once showed me the list of medications covered in relation to MS and there were loads! It might require your hospital to prescribe them on the High Tech prescription but my GP has always done mine


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