Advertisement
If you have a new account but are having problems posting or verifying your account, please email us on hello@boards.ie for help. Thanks :)
Hello all! Please ensure that you are posting a new thread or question in the appropriate forum. The Feedback forum is overwhelmed with questions that are having to be moved elsewhere. If you need help to verify your account contact hello@boards.ie
Hi all,
Vanilla are planning an update to the site on April 24th (next Wednesday). It is a major PHP8 update which is expected to boost performance across the site. The site will be down from 7pm and it is expected to take about an hour to complete. We appreciate your patience during the update.
Thanks all.

MS in all its glory

1…7980828485…104

Comments

  • #2432
    tinofapples
    Registered Users Posts: 2,955 ✭✭✭tinofapples


    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.

    Google "lti list j" for the list of medications offered on the Long Term Illness scheme.


  • #2433
    MyAccount
    Registered Users Posts: 58 ✭✭MyAccount


    tinofapples wrote: »
    Google "lti list j" for the list of medications offered on the Long Term Illness scheme.


    Obviously the public system works better than going private https://b-static.net/vbulletin/images/smilies/mad.png - my main medication is on that list (& dispensed free of charge in fairness) but there are a (small) number of other items on that approved list, my Neuro (who charges handsomely), has told me to use, to deal with side effects from the main medication, which based on his advice, I have buying over the counter at my own expense for some years - I need to get a new Neuro ! - I shudder to think about the thousands of €s I have spent on GP & Neuro consultations and over the counter meds

    As soon this Covid thing settles I will be finding a new GP and ASAP thereafter look for a referral to the Public Systemhttps://b-static.net/vbulletin/images/smilies/confused.png


  • #2434
    byhookorbycrook
    Moderators, Education Moderators, Regional South East Moderators Posts: 12,475 Mod ✭✭✭✭byhookorbycrook


    LTI scheme is cutting back on meds/items allowed. I used to get the contraceptive pill through the scheme and it was refused last year.
    Neuro has suggested Sativex as an option for me, but it's not funded here yet, as far as I know. I've upped the Baclofen, so it that doesn't work, I may need to fund it privately. I funded Fampyra for a while for myself, but if something is proven to be beneficial and a neuro prescribes it, it should be funded.


  • #2435
    GreenRdBoy
    Registered Users Posts: 23 ✭GreenRdBoy


    Hi all. First time posting here but have learned so much from everyone's posts. So thank you.

    My son is 21 and diagnosed aged15. We have tried gilenya (good results for a while), tecfidera (didn't last long) and then lemtrada infusions (×2) . New lesions have shown up so consultant wants to start something new. Options seem to be ocrevus infusions or cladrebine/magenclad tablets.

    He has tolerated all treatments very well up to this point. Just wondering about other peoples experiences with either of these drugs. Basically, having difficulty deciding


  • #2436
    byhookorbycrook
    Moderators, Education Moderators, Regional South East Moderators Posts: 12,475 Mod ✭✭✭✭byhookorbycrook


    I'm not able to comment first hand on those meds, GreenRdBoy, but I just wanted to say that it is great you have his back.


  • Advertisement
  • #2437
    tiggerific
    Registered Users Posts: 19 ✭tiggerific


    Hi all. I’m currently in limbo land having been told on Monday that an MRI I had last week has shown that there are lesions on my brain and cervical spine which suggest MS. I’ve been referred to the Beaumont just have to wait for an appointment now.
    And I just can’t believe the situation. I’m a 35 year old mam of an almost 2 year old, hoping to try for another baby soon and now I just feel like the life I’ve been planning for is gone. I’ve just been crying all day while my toddler looks at me so confused.
    I have been experiencing loss of sensation in my left leg on and off for a couple of years which I’ve been presuming was nerve compression of some kind. But I eventually went to the GP recently to see about getting a scan to see what’s going on. I did mention that I was worried about MS, but my GP didn’t think I should be. And she felt an MRI was unnecessary but referred for me anyway because I have quite bad health anxiety and she wanted me to have some peace of mind.
    And now here I am, waiting to see a neurologist and I just can’t get my head around it. I’ve booked in for counselling next week because I know I will make myself ill with worry and I need to find ways to cope with the uncertainty. I just don’t know how to act like life is normal while I wait to get an appointment. I feel like I’m sitting around waiting for symptoms that I’ve never had and I’m just so scared at the moment. There’s not much point to this post really! Just want to write it down so thanks if you’ve taken the time to read it!


  • #2438
    Carrie6OD
    Registered Users Posts: 324 ✭✭Carrie6OD


    GreenRdBoy wrote: »
    Hi all. First time posting here but have learned so much from everyone's posts. So thank you.

    My son is 21 and diagnosed aged15. We have tried gilenya (good results for a while), tecfidera (didn't last long) and then lemtrada infusions (×2) . New lesions have shown up so consultant wants to start something new. Options seem to be ocrevus infusions or cladrebine/magenclad tablets.

    He has tolerated all treatments very well up to this point. Just wondering about other peoples experiences with either of these drugs. Basically, having difficulty deciding

    I am on Ocrelizumab/ ocrevus. I’ve just completed my first year of it. I have had 3 infusions now and every time have had a mild reaction. So now the nurses give it to me at the slowest possible rate and I can tolerate it. Last time i was in hospital from 9am - 9pm! The IV therapy nurse is amazing. The first year you get 3 infusions then after that it is twice yearly. I can’t say I notice any difference but I have PPMS so my goal is to not deteriorate and I haven’t had any deterioration this year so I’m hoping it’s working. 15 is so young to be diagnosed. Poor guy. I hope he gets on a treatment that suits him soon.


  • #2439
    Loveinapril
    Registered Users Posts: 2,326 ✭✭✭Loveinapril


    tiggerific wrote: »
    Hi all. I’m currently in limbo land having been told on Monday that an MRI I had last week has shown that there are lesions on my brain and cervical spine which suggest MS. I’ve been referred to the Beaumont just have to wait for an appointment now.
    And I just can’t believe the situation. I’m a 35 year old mam of an almost 2 year old, hoping to try for another baby soon and now I just feel like the life I’ve been planning for is gone. I’ve just been crying all day while my toddler looks at me so confused.
    I have been experiencing loss of sensation in my left leg on and off for a couple of years which I’ve been presuming was nerve compression of some kind. But I eventually went to the GP recently to see about getting a scan to see what’s going on. I did mention that I was worried about MS, but my GP didn’t think I should be. And she felt an MRI was unnecessary but referred for me anyway because I have quite bad health anxiety and she wanted me to have some peace of mind.
    And now here I am, waiting to see a neurologist and I just can’t get my head around it. I’ve booked in for counselling next week because I know I will make myself ill with worry and I need to find ways to cope with the uncertainty. I just don’t know how to act like life is normal while I wait to get an appointment. I feel like I’m sitting around waiting for symptoms that I’ve never had and I’m just so scared at the moment. There’s not much point to this post really! Just want to write it down so thanks if you’ve taken the time to read it!

    Oh you poor, poor thing. Being diagnosed is a horrific time, there is a lot of unknown and I am seeing a lot of myself in your post. Please be kind to yourself. Let yourself feel scared but don't let it be all you are. Have you contacted the MS Society? Mary and Sean cover North Dublin and Mary in particular is lovely and supportive if you need to cry at someone who has knowledge of MS. My world fell apart when I was diagnosed ten years ago at 27, I was terrified. But I spent far too much time worrying about what night be. I suffer with anxiety too so I understand it is easier said than done but look into mindfulness and meditation. It helped me ground myself in the hear and now. For the most part, I am doing well. Since diagnosis, I have gotten married and have a 3 year old and a one year old. Don't let MS stop your life from happening x


  • #2440
    Lollipops23
    Registered Users Posts: 5,420 ✭✭✭Lollipops23


    tiggerific wrote: »
    I’ve just been crying all day while my toddler looks at me so confused.

    And now here I am, waiting to see a neurologist and I just can’t get my head around it. I’ve booked in for counselling next week because I know I will make myself ill with worry and I need to find ways to cope with the uncertainty. I just don’t know how to act like life is normal while I wait to get an appointment. I feel like I’m sitting around waiting for symptoms that I’ve never had and I’m just so scared at the moment. There’s not much point to this post really! Just want to write it down so thanks if you’ve taken the time to read it!

    First of all, sorry to see you here. Secondly, allow yourself space to wallow, if that's what you need. Don't let anyone try to tell you how to feel, this is entirely yours to deal with how you see fit.

    Now just know there is SO much to help- MS doesn't mean what it did even 20 years ago. There's plenty of support and treatments.

    But for right now, just try to wrap your head around it and come to terms at your own speed.


  • #2441
    tinofapples
    Registered Users Posts: 2,955 ✭✭✭tinofapples


    Lollipops23 wrote: »
    First of all, sorry to see you here. Secondly, allow yourself space to wallow, if that's what you need. Don't let anyone try to tell you how to feel, this is entirely yours to deal with how you see fit.

    Now just know there is SO much to help- MS doesn't mean what it did even 20 years ago. There's plenty of support and treatments.

    But for right now, just try to wrap your head around it and come to terms at your own speed.

    I think this is some very solid advice, take your time to absorb this change to your life, as much time as you need ;)


  • Advertisement
  • #2442
    tiggerific
    Registered Users Posts: 19 ✭tiggerific


    Loveinapril wrote: »
    Oh you poor, poor thing. Being diagnosed is a horrific time, there is a lot of unknown and I am seeing a lot of myself in your post. Please be kind to yourself. Let yourself feel scared but don't let it be all you are. Have you contacted the MS Society? Mary and Sean cover North Dublin and Mary in particular is lovely and supportive if you need to cry at someone who has knowledge of MS. My world fell apart when I was diagnosed ten years ago at 27, I was terrified. But I spent far too much time worrying about what night be. I suffer with anxiety too so I understand it is easier said than done but look into mindfulness and meditation. It helped me ground myself in the hear and now. For the most part, I am doing well. Since diagnosis, I have gotten married and have a 3 year old and a one year old. Don't let MS stop your life from happening x


    Thank you so much! You’re words are very encouraging. And I’m glad you are well!
    Obviously at the minute I haven’t been officially diagnosed so I don’t know what’s ahead of me in regards to what type it is and treatment. The tiniest part of me wants to hope that they’re wrong but I’m a ‘worst case scenario’ person so I think that’s how I’ll approach it! A grim approach but that’s generally how I deal with things.
    I will check out the MS society too, thanks!


  • #2443
    tiggerific
    Registered Users Posts: 19 ✭tiggerific


    Lollipops23 wrote: »
    First of all, sorry to see you here. Secondly, allow yourself space to wallow, if that's what you need. Don't let anyone try to tell you how to feel, this is entirely yours to deal with how you see fit.

    Now just know there is SO much to help- MS doesn't mean what it did even 20 years ago. There's plenty of support and treatments.

    But for right now, just try to wrap your head around it and come to terms at your own speed.

    Thank you!
    I’m certainly wallowing anyway. This wait to see a neurologist is what I’m dreading. Maybe once I know for sure, I will be easier to comes to terms with.


  • #2444
    Lollipops23
    Registered Users Posts: 5,420 ✭✭✭Lollipops23


    tiggerific wrote: »
    Thank you!
    I’m certainly wallowing anyway. This wait to see a neurologist is what I’m dreading. Maybe once I know for sure, I will be easier to comes to terms with.

    I can imagine. For me that big question mark phase didn't happen as I was severe enough for them to know quickly what the problem was (that, and a family history of MS).

    I would encourage you to make a list of any and all questions you have going in- I've been doing that for each annual appointment, as it's very easy to forget.

    Also- and this is a biggie- RESIST THE URGE TO GOOGLE!!!!


  • #2445
    cj maxx
    Registered Users Posts: 13,350 ✭✭✭✭cj maxx


    Lollipops23 wrote: »
    First of all, sorry to see you here. Secondly, allow yourself space to wallow, if that's what you need. Don't let anyone try to tell you how to feel, this is entirely yours to deal with how you see fit.

    Now just know there is SO much to help- MS doesn't mean what it did even 20 years ago. There's plenty of support and treatments.

    But for right now, just try to wrap your head around it and come to terms at your own speed.

    True , allow yourself time to take it in. . Myself, the day I was diagnosed I listened to a podcast that night which , totally unexpectedly, was about benzotropine and how it caused remylation in mice. Just as I thought it was the end that podcast lifted me .


  • #2446
    Nigel Fairservice
    Registered Users, Moderators, Regional Abroad Moderators Posts: 2,175 Mod ✭✭✭✭Nigel Fairservice


    cj maxx wrote: »
    True , allow yourself time to take it in. . Myself, the day I was diagnosed I listened to a podcast that night which , totally unexpectedly, was about benzotropine and how it caused remylation in mice. Just as I thought it was the end that podcast lifted me .

    The day I was diagnosed I went home from the hospital, made a sandwich, watched an episode of True Detective and went into work in the afternoon.

    They told me 18 months before the above that they thought I might have had MS. I was coming to the end of a 10 day hospital stay and nobody thought to tell me until I was sitting on the edge of my hospital bed waiting to get the final nod for discharge. The registrar came into the room, pulled the curtain, blurted out that what I experienced might be MS but they weren't sure and left abruptly. I was fairly stunned after that!

    I think I just got used to the idea of probably having MS over the 18 months and the little things I had experienced over the years before then like always being hot and having very itchy skin after showering/physical activity made sense with a MS diagnosis.


  • #2447
    whatever76
    Registered Users Posts: 1,007 ✭✭✭whatever76


    Recently diagnosed myself since early Oct . Had my first relapse over the summer . Inflammation was flagged in an MRI and GP advised me to go to A&E for further tests etc ... Anything sinister was ruled out at that point but had to get an LP to confirm MS diagnoses .. so it was confirmed in Oct. Still processing it TBH - I was of mindset at start to be positive that it could have been worse but now at moment I am wallowing a bit and feeling scared for whats ahead as I dont know how long its been developing and a few things I experienced last few years that prob all now down to MS. I learned about the MS HUG recently and I experienced that over a year ago but put it down to Anxiety /panic attack as went for Heart tests etc and all that was fine .. so I know hindsight it a great thing but just looking back now a few things are making sense.

    On plus side I must say there is huge support/resources out there and please do avail of these. I am trying not to think of whats ahead and just try and make lifestyle changes now to try and help keep it at bay and stop the progress. I have started Techfedera the last few weeks - so far so good although I have experienced the common flushing side effect ! Best of luck ... its ****e for sure


  • #2448
    Lollipops23
    Registered Users Posts: 5,420 ✭✭✭Lollipops23


    My annual MRI was last week and they called me this week to tell me to come in for a 1:1 with the consultant. They insisted there's nothing wrong and I shouldn't worry, but I haven't even met the consultant since I was diagnosed 5 years ago.

    Can't help but worry a little bit!


  • #2449
    echo beach
    Registered Users Posts: 1,252 ✭✭✭echo beach


    Lollipops23 wrote: »
    My annual MRI was last week and they called me this week to tell me to come in for a 1:1 with the consultant. They insisted there's nothing wrong and I shouldn't worry, but I haven't even met the consultant since I was diagnosed 5 years ago.

    Can't help but worry a little bit!
    I would say it is routine because you haven’t seen the consultant in so long. Are you on treatment? They might want to review it.

    Telling someone not to worry is like saying, don’t think about pink elephants. You then can’t think about anything else.


  • #2450
    Lollipops23
    Registered Users Posts: 5,420 ✭✭✭Lollipops23


    echo beach wrote: »
    I would say it is routine because you haven’t seen the consultant in so long. Are you on treatment? They might want to review it.

    Telling someone not to worry is like saying, don’t think about pink elephants. You then can’t think about anything else.

    Yep have been on Gilenya since 3 months after diagnosis and it's worked like a charm. Zero lesion activity (bar shrinking) in 5 years.
    I hope they don't want to take me off it, I've never been on anything else.


  • #2451
    Salmotrutta
    Registered Users Posts: 99 ✭✭Salmotrutta


    Lollipops23 wrote: »
    Yep have been on Gilenya since 3 months after diagnosis and it's worked like a charm. Zero lesion activity (bar shrinking) in 5 years.
    I hope they don't want to take me off it, I've never been on anything else.

    Hopefully it's nothing and they just want to do a review. I haven't seen my neuro in a few years either, just get an annual MRI and hear back that he's happy with it.
    I'm on Gilenya too and all good MS-wise, but have had some experience with skin cancer, which may be related - had a basal cell carcinoma removed 2 years ago and having another spot looked at soon. Neuro just said they would keep an eye on it and to stay on Gilenya, but if I start getting more of these things I will have to ask about changing meds. Which I really don't want to do, as Gilenya has kept my MS remarkably stable for the 6 years I've been on it...


  • Advertisement
  • #2452
    cj maxx
    Registered Users Posts: 13,350 ✭✭✭✭cj maxx


    Lollipops23 wrote: »
    My annual MRI was last week and they called me this week to tell me to come in for a 1:1 with the consultant. They insisted there's nothing wrong and I shouldn't worry, but I haven't even met the consultant since I was diagnosed 5 years ago.

    Can't help but worry a little bit!
    I know its a dumb thing to say , but don't worry.
    They have to see patients so if your MRI was fine they're only checking in and seeing if you have any questions. In my own experience the consultant will see you personally after starting dmd's then you're mostly dealt with by another doctor in the neurology department . The consultant will then personally see you again after a certain number of months/years.
    I think that's how it works


  • #2453
    Salmotrutta
    Registered Users Posts: 99 ✭✭Salmotrutta


    Does anyone else get bad hand fatigue/cramp from using a computer mouse? I get cramp very easily in my hands/lower arms, and at the end of a busy day on the computer I can hardly pick up the kids sometimes. Anyone know of an ergonomic alternative to the standard mouse that's easier on the hand muscles?


  • #2454
    Lollipops23
    Registered Users Posts: 5,420 ✭✭✭Lollipops23


    echo beach wrote: »
    I would say it is routine because you haven’t seen the consultant in so long. Are you on treatment? They might want to review it.

    Telling someone not to worry is like saying, don’t think about pink elephants. You then can’t think about anything else.

    So unfortunately were were all wrong- new lesion on my brain stem.

    They're starting me on a new treatment- Tysabri infusion in the new year.

    Trying not to dwell on it too much, hoping this one does the trick for longer than the 5 years I got out of Gilenya!


  • #2455
    Onity
    Registered Users Posts: 173 ✭✭Onity


    Salmotrutta wrote: »
    Does anyone else get bad hand fatigue/cramp from using a computer mouse? I get cramp very easily in my hands/lower arms, and at the end of a busy day on the computer I can hardly pick up the kids sometimes. Anyone know of an ergonomic alternative to the standard mouse that's easier on the hand muscles?

    Get yourself an ergonomic/vertical mouse - I have carpal tunnel and I can't use a traditional mouse because it hurts my hand something serious after about ten minutes. It'll look and feel really weird for the first few days but then you totally get used to it and you won't look back! You can pick them up online easily enough. I'd recommended Anker, this is similar to the one I use: Anker AK-UBA 2.4G Wireless Vertical Ergonomic Optical Mouse, 800 / 1200 /1600 DPI, 5 Buttons for Laptop, Desktop, PC, Macbook - Black https://www.amazon.co.uk/dp/B00BIFNTMC/ref=cm_sw_r_cp_api_fabc_RIN3FbV6ZKC1T


  • #2456
    tinofapples
    Registered Users Posts: 2,955 ✭✭✭tinofapples


    Any of ye guys have the conversation about the vaccine with any of your MS team ? I was due my Rituximab infusion tomorrow but it's been postponed for two reasons, one being with the recent rise in Covid-19 again it will leave my B cells depleted and thus me more vulnerable and secondly because it reduces B cell count it renders the vaccine less effective, possibly even pointless.

    Speaking to my MS nurse it didn't sound like there will be any urgency in getting me a vaccine, so I guess we're not high on the priority list, are we ?


  • #2457
    Loveinapril
    Registered Users Posts: 2,326 ✭✭✭Loveinapril


    I am a frontline worker and have MS. I am interested to see which one of those things gets me the vaccine first!


  • #2458
    tinofapples
    Registered Users Posts: 2,955 ✭✭✭tinofapples


    Loveinapril wrote: »
    I am a frontline worker and have MS. I am interested to see which one of those things gets me the vaccine first!

    Frontline worker I'd imagine and surely soon, as in a week or two.


  • #2459
    is_that_so
    Registered Users Posts: 32,136 ✭✭✭✭is_that_so


    Posting this here as it may well be of interest to people. Very early days and just in mice but may offer real promise.
    BioNTech CEO applies COVID-19 vaccine's mRNA tech to multiple sclerosis

    https://www.fiercebiotech.com/research/biontech-ceo-turns-covid-19-vaccine-s-mrna-tech-against-multiple-sclerosis


  • #2460
    Lollipops23
    Registered Users Posts: 5,420 ✭✭✭Lollipops23


    Lollipops23 wrote: »
    .

    Trying not to dwell on it too much, hoping this one does the trick for longer than the 5 years I got out of Gilenya!

    Had my first Tysabri infusion yesterday- turns out I've become JC positive in the last 5 years, so I'll only be able to stay on this treatment for 2 years. Pain in the a*se, but sure lookit what can you do!


  • Advertisement
  • #2461
    whatever76
    Registered Users Posts: 1,007 ✭✭✭whatever76


    Lollipops23 wrote: »
    Had my first Tysabri infusion yesterday- turns out I've become JC positive in the last 5 years, so I'll only be able to stay on this treatment for 2 years. Pain in the a*se, but sure lookit what can you do!

    Oh I am sorry to hear this - I am only recently diagnosed myself so had to look up JC virus - such a pain as you say its all so complex. Good to know at least and keep an eye on so hope all goes ok . I am starting Gilenya end of month - anything to watch out for ? I was on Techfidera but had to come off as It was not suiting me.


Advertisement