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MS in all its glory

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    #1562
    miseagustusa
    Registered Users Posts: 270 ✭✭miseagustusa


    Hi all, I was diagnosed with MS in September after Optic Neuritis in June. I'm due to start Gilenia soon!!! .. does anyone know if Gilenia helps fatigue?? Or are there any other meds for this??? .....


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    #1563
    Lollipops23
    Registered Users Posts: 5,420 ✭✭✭Lollipops23


    miseagustusa wrote: »
    Hi all, I was diagnosed with MS in September after Optic Neuritis in June. I'm due to start Gilenia soon!!! .. does anyone know if Gilenia helps fatigue?? Or are there any other meds for this??? .....

    I've been lucky enough that fatigue hasn't been a major one for me; I started Gilenya just over 2 months ago. It's not really designed to alleviate the symptoms, rather to help prevent further ones.

    I was told to take Vit D supplements (there's some evidence it helps repair damage), and this may help with the fatigue. Try to eat healthily too.


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    #1564
    Lollipops23
    Registered Users Posts: 5,420 ✭✭✭Lollipops23


    http://www.bbc.com/news/health-35065905

    This is on tonight on BBC. Interesting treatment ideas, although seems fairly intense.


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    #1565
    Salmotrutta
    Registered Users Posts: 99 ✭✭Salmotrutta


    miseagustusa wrote: »
    Hi all, I was diagnosed with MS in September after Optic Neuritis in June. I'm due to start Gilenia soon!!! .. does anyone know if Gilenia helps fatigue?? Or are there any other meds for this??? .....

    Have you got bad fatigue? That's unusual so soon after a first episode I think. If you read work by George Jelinek he's a big advocate of exercise and diet to control the condition. The vegan low-fat diet is not for me, but I do believe that eating healthy, as in lots of fresh fruit and veg and as few processed foods as possible, including lots of healthy unsaturated fats, can boost energy levels. Also trying to keep as fit as possible helps with energy levels - I know not everyone can run or lift weights, etc., but being as strong and fit as you can be while you can work out will only help long-term if/when new symptoms limit your ability to exercise.

    Like Lollipops I don't have fatigue thankfully. I've been on Gilenya about 17 months now, it's a disease-modifying drug meaning it treats the underlying cause, it doesn't treat symptoms like fatigue, but it may improve symptoms by reducing disease activity. If the symptom is caused by already existing nerve damage that's less likely. I have hand numbness that is long-term, the Gilenya has not improved the symptom, but I haven't had any relapses since being on it.


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    #1566
    Lollipops23
    Registered Users Posts: 5,420 ✭✭✭Lollipops23


    Salmotrutta wrote: »
    I have hand numbness that is long-term, the Gilenya has not improved the symptom, but I haven't had any relapses since being on it.

    Snap! (although my handwriting has inexplicably returned in recent days!)


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    #1567
    miseagustusa
    Registered Users Posts: 270 ✭✭miseagustusa


    Hi all, thanks for replies!!! Do you know if provigil is available in Ireland??? Or Adderall??? Was talking to a friend in America who takes these and said they are brilliant for fatigue, she said she feels 'normal' most of the day after taken them!!!


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    #1568
    ash23
    Closed Accounts Posts: 4,791 ✭✭✭ash23


    Salmotrutta wrote: »
    I've been invited to a seminar for Gilenya patients at the end of the month (organised/sponsored by Novartis)... a talk about mindfulness, one about brain health, and ask the expert session (Michael Hennessy, who happens to be my neurologist). Anyone ever been to one of these? Are they worth going to? Might go along anyway, I've actually never met another MSer yet since diagnosis (only a year and a half)...


    I got a text about this over the weekend. Invite must have went to my old address. What time is it on and where? I've also sent a text back asking for the info again but trying to see times so I can arrange a babysitter etc asap.

    Hopefully I'll be going to it if you'd like to meet up there?


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    #1569
    Salmotrutta
    Registered Users Posts: 99 ✭✭Salmotrutta


    ash23 wrote: »
    I got a text about this over the weekend. Invite must have went to my old address. What time is it on and where? I've also sent a text back asking for the info again but trying to see times so I can arrange a babysitter etc asap.

    Hopefully I'll be going to it if you'd like to meet up there?

    10.30 to 14.00, light lunch included. PM on the way...


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    #1570
    embee
    Registered Users Posts: 2,890 ✭✭✭embee


    Am currently experiencing extreme pain in my hands. Up til now pain hasn't been a symptom of mine but I'm wondering if it could be MS related? I've also been very sleepy and have a lot of soreness throughout the body. My neurologist has said I am maxed out on steroids, she doesn't want me to have them too often but I feel as though this is the beginning of a relapse. Any of ye have to endure pain as part of your MS? It's pretty horrendous and hasn't reponded to nurofen plus or paracetamol.


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    #1571
    byhookorbycrook
    Moderators, Education Moderators, Regional South East Moderators Posts: 12,485 Mod ✭✭✭✭byhookorbycrook


    Yes to pain, lots of it. Every inch of my body feels like it has done a marathon. I had presumed this musco-skeletal pain was what everyone had and was taken aback to find many of my online buddies didn't have it!
    I found difene helped a good bit, as does smacking on the voltarol gel!


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    #1572
    byhookorbycrook
    Moderators, Education Moderators, Regional South East Moderators Posts: 12,485 Mod ✭✭✭✭byhookorbycrook


    Yes to pain, lots of it. Every inch of my body feels like it has done a marathon. I had presumed this musco-skeletal pain was what everyone had and was taken aback to find many of my online buddies didn't have it!
    I found difene helped a good bit, as does smacking on the voltarol gel!


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    #1573
    Lollipops23
    Registered Users Posts: 5,420 ✭✭✭Lollipops23


    I have a conundrum; I've just been for an interview with a very large multinational (a big 4) and it went really well. I'm now at the stage where I'll be called back for a 2nd round and there's a very real chance I may get it...where do I stand regarding telling them about my MS? Am I obliged to tell them?

    My only symptoms currently is some loss of sensation in one hand; I can still type (obvs!) and it doesn't affect most day to day activities. Is it something I need or should tell them about, and if so, at what stage?


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    #1574
    fungie
    Registered Users Posts: 688 ✭✭✭fungie


    Lollipops23 wrote: »
    I have a conundrum; I've just been for an interview with a very large multinational (a big 4) and it went really well. I'm now at the stage where I'll be called back for a 2nd round and there's a very real chance I may get it...where do I stand regarding telling them about my MS? Am I obliged to tell them?

    My only symptoms currently is some loss of sensation in one hand; I can still type (obvs!) and it doesn't affect most day to day activities. Is it something I need or should tell them about, and if so, at what stage?

    If it doesn't affect your work I personally wouldn't.


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    #1575
    ash23
    Closed Accounts Posts: 4,791 ✭✭✭ash23


    Lollipops23 wrote: »
    I have a conundrum; I've just been for an interview with a very large multinational (a big 4) and it went really well. I'm now at the stage where I'll be called back for a 2nd round and there's a very real chance I may get it...where do I stand regarding telling them about my MS? Am I obliged to tell them?

    My only symptoms currently is some loss of sensation in one hand; I can still type (obvs!) and it doesn't affect most day to day activities. Is it something I need or should tell them about, and if so, at what stage?

    You're not obliged to tell them. I personally wouldn't until I had the job and was permanent and then if I had a relapse or was struggling I'd tell them.

    I was with my current employer when I was being tested and diagnosed so they've always known and it's good because they've worked with me when I've been off sick or needed anything but I was permanent when it happened. If I was leaving here I'd stay quiet about it until I was well in the door of a new employer.
    It's not meant to be looked on as a negative by a prospective employer but the reality is that it probably would be imo.


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    #1576
    ElleEm
    Closed Accounts Posts: 3,981 ✭✭✭ElleEm


    If they ask, you should tell them. I was asked in an interview about the gap in my work and I simply said I was off due to ill health but followed it up with how excited I was to get back to work. They didn't ask me to expand and I got the job!


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    #1577
    embee
    Registered Users Posts: 2,890 ✭✭✭embee


    Am checking into the NRH on Monday to try to improve my walking. Not allowed have Fampyra as I've a history of juvenile epilepsy. Am nervous about going in.. I've heard people can be in rehab for months.


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    #1578
    Blinder
    Registered Users Posts: 243 ✭✭Blinder


    embee wrote: »
    Am checking into the NRH on Monday to try to improve my walking. Not allowed have Fampyra as I've a history of juvenile epilepsy. Am nervous about going in.. I've heard people can be in rehab for months.

    Best of luck today Embee.


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    #1579
    byhookorbycrook
    Moderators, Education Moderators, Regional South East Moderators Posts: 12,485 Mod ✭✭✭✭byhookorbycrook


    Hope it goes to plan. Anyone I have heard of who has been in rehab for a long period of time has been "in" for serious injuries after accidents.


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    #1580
    BohToffee
    Registered Users Posts: 121 ✭✭BohToffee


    Best of luck embee, the nrh is a wonderful facility full of great staff, from the outside looking in it appears patients are there for a 6 week stint in the hope that will aide sufficient recovery for discharge but if they feel another few weeks would be beneficial they can and will keep you longer...


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    #1581
    embee
    Registered Users Posts: 2,890 ✭✭✭embee


    First week was okay, just missed my daughter terribly. Was doing a load of assessments - physiotherapist did strength and power assessment and did the Berg balance scale, the occupational therapist did assessment on my ability to do stuff like cook meals, she also assessed my cognition and memory as I had struggled with those initially when I was in the Beaumont. Speech and language therapist cleared me as not having any difficulty in that area anymore. Also spoke to social worker and the consultant I'm under. All the assessments were within normal ranges. Really, the only part of me not working is my right leg but apparently with sufficient physio that'll come right. I'm the least unwell person there by a country mile.


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    #1582
    Blinder
    Registered Users Posts: 243 ✭✭Blinder


    embee wrote: »
    Really, the only part of me not working is my right leg but apparently with sufficient physio that'll come right.

    That's great that it will help Embee. Have they given you any indication how long you need to stay?
    Sorry to hear you're missing your daughter. Does she get to visit at all?
    Hopefully though, but being away now and working with the physios, you'll go home a much more mobile and happy mammy


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    #1583
    BohToffee
    Registered Users Posts: 121 ✭✭BohToffee


    Have you asked to return home for weekends or would that be in anyway useful to you embee??? I used to collect OH on a Friday after work, home till Sunday night..


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    #1584
    BohToffee
    Registered Users Posts: 121 ✭✭BohToffee


    Regrettably my wife lost her battle today with this baxtard illness. I wish everyone here the best and will continue to dip in and out of the message board.
    I wish you all the best in your efforts to overcome MS and do hope that someday soon a cure is found and provided to all...


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    #1585
    Blinder
    Registered Users Posts: 243 ✭✭Blinder


    Sorry for your loss BohToffee


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    #1586
    Salmotrutta
    Registered Users Posts: 99 ✭✭Salmotrutta


    Sorry to hear that BohToffee. Thinking of you and your family at this time...


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    #1587
    ash23
    Closed Accounts Posts: 4,791 ✭✭✭ash23


    Very sorry to hear of your loss bohtoffee.


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    #1588
    byhookorbycrook
    Moderators, Education Moderators, Regional South East Moderators Posts: 12,485 Mod ✭✭✭✭byhookorbycrook


    Oh no, so sorry.


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    #1589
    JenniFurr
    Closed Accounts Posts: 232 ✭✭JenniFurr


    Hi, I'm newly diagnosed since January. I'm just wondering if anyone here carries a medical alert bracelet or similar? Is there a need for one to state you have MS and what medications you're taking?


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    #1590
    kieranfitz
    Registered Users Posts: 592 ✭✭✭kieranfitz


    I know that they're available but I'm the only MSer I know so I can't say how popular they are.


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    #1591
    ElleEm
    Closed Accounts Posts: 3,981 ✭✭✭ElleEm


    JenniFurr wrote: »
    Hi, I'm newly diagnosed since January. I'm just wondering if anyone here carries a medical alert bracelet or similar? Is there a need for one to state you have MS and what medications you're taking?

    I can't ever imagine needing one. There are no medications I can't take due to the MS so I doubt emergency services would need to know about it immediately.


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