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MS in all its glory

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    #902
    byhookorbycrook
    Moderators, Education Moderators, Regional South East Moderators Posts: 12,485 Mod ✭✭✭✭byhookorbycrook


    Ash, when I was on betaferon my LFT went bananas, but it was due to the combo of betaferon and tegretol. Could it be something similar?


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    #903
    ash23
    Closed Accounts Posts: 4,791 ✭✭✭ash23


    byhookorbycrook wrote: »
    Ash, when I was on betaferon my LFT went bananas, but it was due to the combo of betaferon and tegretol. Could it be something similar?


    I'm not sure. I was warned that gilenya might cause liver problems, hence the regular blood tests. I'm waiting to hear back from the hospital about the results. The gp was concerned but I'm hoping that the the neurologist will have more experience and they won't have to take me off the gilenya.


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    #904
    byhookorbycrook
    Moderators, Education Moderators, Regional South East Moderators Posts: 12,485 Mod ✭✭✭✭byhookorbycrook


    I know when I got the first higher reading through the tests done by the gp, the neuro wasn't a bit concerned, what was considered "higher" in this area was only a blip on her radar. Now as months went on and the levels rose and rose, then there was cause for concern. Moral of the story, I'd be more inclined to see what the neuro, a specialist in the area, says ,rather than a gp, who is "general" in name and nature.


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    #905
    ash23
    Closed Accounts Posts: 4,791 ✭✭✭ash23


    I have to stop taking them and get my bloods done again next week :(
    I can't see them putting me back on them again. Another drug bites the dust. Think the next step is Tysabri but knowing my stupid liver, it'll probably act up on that too.

    I've had elevated liver enzymes on and off for the last decade but they'd settled down in the last few years until I started the Gilenya.


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    #906
    byhookorbycrook
    Moderators, Education Moderators, Regional South East Moderators Posts: 12,485 Mod ✭✭✭✭byhookorbycrook


    I'm on Tysabri and have been relapse free since I started it in Jan 2009. The PML is the biggie as regards possible side effects, but the first two years are considered quite low for PML risk, especially if you test negative for the JC virus. I am hoping to swop to Lemtrada when that comes on stream, but as usual , funding is going to be the big issue.


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    #907
    ash23
    Closed Accounts Posts: 4,791 ✭✭✭ash23


    I'm diagnosed a year next week and already been ruled out for interferons and copaxone which didn't work and now Gilenya because it doesn't agree with me.
    Starting to think I'll never find something that works for me.


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    #908
    byhookorbycrook
    Moderators, Education Moderators, Regional South East Moderators Posts: 12,485 Mod ✭✭✭✭byhookorbycrook


    Tysabri is the best drug there is right now, if you get a chance, go for it. If you want more info, feel free to pm.


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    #909
    ash23
    Closed Accounts Posts: 4,791 ✭✭✭ash23


    The nurse rang back yesterday evening and they want me to stay on them and get the bloods done again next week to see what the liver is at.
    She said if it elevates again I'll have to come off them. If they stay the same, they'll test them again after Christmas and if they go down, happy days.

    Apparently they were reviewing other bloods and a good few other people had a spike in liver enzymes the first month also.
    Here's hoping! No drinkies for me this weekend!


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    #910
    byhookorbycrook
    Moderators, Education Moderators, Regional South East Moderators Posts: 12,485 Mod ✭✭✭✭byhookorbycrook


    And lots of milk thistle.


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    #911
    irishrver
    Closed Accounts Posts: 60 ✭✭irishrver


    Hi I am a new member of the ms club first symptoms were in August and have just finished the first 2 weeks on rebif all good so far :)
    I would like to thank all of you have posted here, it was a great help to me my wife and family, it helped us to understanding what lays ahead of us and how to deal with it. I avoided looking up ms online until I had a full diagnosis I just read all of this tread so thank you.


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    #912
    byhookorbycrook
    Moderators, Education Moderators, Regional South East Moderators Posts: 12,485 Mod ✭✭✭✭byhookorbycrook


    Welcome here, but I'd wish you weren't- if you follow. I'm not sure if you take any supplements but there is a proven link between the lack of Vit D and MS, so I take it each day, as well as Vit B and omega oils. PM me if you need to ask anything you don't want to post publicly.


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    #913
    irishrver
    Closed Accounts Posts: 60 ✭✭irishrver


    I already had a healthy diet but I have started taking vit d in sept also starflower oil,cod liver oil and flaxseed oil my wife had read it on line some where and put me on them.


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    #914
    byhookorbycrook
    Moderators, Education Moderators, Regional South East Moderators Posts: 12,485 Mod ✭✭✭✭byhookorbycrook


    You only need one form of omega oils, so taking 3 different types may be a waste. Healthy diet is good, but don't be a slave to it either.:D


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    #915
    mamakitten
    Registered Users Posts: 63 ✭✭mamakitten


    Whats the recommended dose of Vit D for people with MS?


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    #916
    byhookorbycrook
    Moderators, Education Moderators, Regional South East Moderators Posts: 12,485 Mod ✭✭✭✭byhookorbycrook


    There's no real recommended dose, I take twice the RDA


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    #917
    ash23
    Closed Accounts Posts: 4,791 ✭✭✭ash23


    mamakitten wrote: »
    Whats the recommended dose of Vit D for people with MS?

    My neuro has me on 800IU daily. Think the RDA is 600IU so it's not that much higher than my RDA.


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    #918
    fungie
    Registered Users Posts: 688 ✭✭✭fungie


    ash23 wrote: »
    My neuro has me on 800IU daily. Think the RDA is 600IU so it's not that much higher than my RDA.

    Id take about 8000UI daily


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    #919
    mamakitten
    Registered Users Posts: 63 ✭✭mamakitten


    Thanks we can't remember what the neuro said :) Himself thinks it was 2000iu


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    #920
    ash23
    Closed Accounts Posts: 4,791 ✭✭✭ash23


    I had great news yesterday. My liver function tests came way back down again so I can stay on Gilenya for now.
    I've to have them repeated in the new year but hopefully it was just the initial reaction to taking the drug.

    The one they were worried about went from 49 to 269 and is back down to 64 now which is more acceptable to them :)


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    #921
    byhookorbycrook
    Moderators, Education Moderators, Regional South East Moderators Posts: 12,485 Mod ✭✭✭✭byhookorbycrook


    Excellent news!


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    #922
    ash23
    Closed Accounts Posts: 4,791 ✭✭✭ash23


    .....and now I have a kidney infection :( It came on very quickly so I took myself to the out of hours doc and got an antibiotic. Hopefully I won't be sick over Christmas. Last Christmas was ruined with the diagnosis and steroids Christmas week. Looks like this Christmas isn't fairing much better :(


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    #923
    byhookorbycrook
    Moderators, Education Moderators, Regional South East Moderators Posts: 12,485 Mod ✭✭✭✭byhookorbycrook


    Just seeing this now, hope you are feeling better.


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    #924
    ash23
    Closed Accounts Posts: 4,791 ✭✭✭ash23


    byhookorbycrook wrote: »
    Just seeing this now, hope you are feeling better.


    I'm grand thankfully. Glad I went to the out of hours doc as I got the antibiotics started so didn't have too long a time before they kicked I .

    Had a lovely Christmas. Hope everyone here had a good one too and a happy and healthy new year to you all too.


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    #925
    bnt
    Registered Users Posts: 12,967 ✭✭✭✭bnt


    I would caution against large doses of Vitamin D: they increase calcium uptake, which is good for bones up to a point, but too much calcium can lead to other problems. I was taking 800IU (2X RDA)daily for several years, thinking it would help with the MS, and perhaps it did. However, I developed a kidney stone a couple of years ago. (Not a big one, but sufficiently large to make me think a kidney was about to explode (renal colic). I dropped to a miulti-vitamin every other day, and that problem hasn't reoccurred. According to one study, the RDA appears to be OK, but I don't think there are any studies on the long-term effects of megadoses.

    From out there on the moon, international politics look so petty. You want to grab a politician by the scruff of the neck and drag him a quarter of a million miles out and say, ‘Look at that, you son of a bitch’.

    — Edgar Mitchell, Apollo 14 Astronaut



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    #926
    fungie
    Registered Users Posts: 688 ✭✭✭fungie


    bnt wrote: »
    I would caution against large doses of Vitamin D: they increase calcium uptake, which is good for bones up to a point, but too much calcium can lead to other problems. I was taking 800IU (2X RDA)daily for several years, thinking it would help with the MS, and perhaps it did. However, I developed a kidney stone a couple of years ago. (Not a big one, but sufficiently large to make me think a kidney was about to explode (renal colic). I dropped to a miulti-vitamin every other day, and that problem hasn't reoccurred. According to one study, the RDA appears to be OK, but I don't think there are any studies on the long-term effects of megadoses.

    I would disagree, there are studies shown that 10000 Ui is a safe upper limit, at the end of the day its how much you absorb. Best advice is to get a blood test and see what your levels are and increase/decrease accordingly.


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    #927
    byhookorbycrook
    Moderators, Education Moderators, Regional South East Moderators Posts: 12,485 Mod ✭✭✭✭byhookorbycrook


    RDA was originally calculated for healthy army males, I think?Or did I dream that?


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    #928
    outnumbered82
    Registered Users Posts: 131 ✭✭outnumbered82


    Happy new year to everyone hope you all had a good Christmas a that 2014 is great for everyone.
    Has anyone found that they have problems with memory in the last while I've been forgetting things, like. Where I parked left keys or small things that I was ment to do , nothing major just finding I'm forgetting small things


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    #929
    kkelly77
    Registered Users Posts: 1,673 ✭✭✭kkelly77


    Anyone have any experience with car insurance/drivers licence application re: multiple sclerosis? Thanks.


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    #930
    ash23
    Closed Accounts Posts: 4,791 ✭✭✭ash23


    kkelly77 wrote: »
    Anyone have any experience with car insurance/drivers licence application re: multiple sclerosis? Thanks.

    You need to get your doctor to fill in the medical form http://www.rsa.ie/documents/licensed%20drivers/medical_report_d_501_form.pdf


    You bring in your old licence and the medical form and the application form (http://www.ndls.ie/images/Documents/DrivingLicence/D401_Full_Licence_app_form.pdf) and get your current licence changed to reflect the noting of a medical condition. To exchange your current licence (once it's still in date) for a new one noting the MS, there is no charge.

    My insurance company (Zurich) just require that I've got it noted on my licence. Other companies differ so best to call and advise them of the diagnosis.

    I only got a 12 month licence which is due for renewal next month so I'm hoping I'll get at least a 3 year one this time around. Renewing every year is a pain and an expense and even more hassle now that you can't post it away.


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    #931
    byhookorbycrook
    Moderators, Education Moderators, Regional South East Moderators Posts: 12,485 Mod ✭✭✭✭byhookorbycrook


    I got a 3year one, just before the new change. My gp did the forms for me. I always get my neuro to give me a letter stating I am fit to drive, which I send to the insurance company each year (though I was told over the phone that I didn't need to...) I notified them in writing and over the phone of my diagnosis too.


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