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MS in all its glory

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  • Closed Accounts Posts: 4 Liloooney


    Thanks so much everyone! this is so helpful, and i'll definitly keep the countdown issue in mind when i go on my placement in january! thanks again, and keep the comments rolling if you can. Thanks.


  • Registered Users Posts: 110 ✭✭val444


    Hi all

    Has anyone here tried Provigil? Is it easy to have it prescribed? Does it need to be prescribed by a neurologist, or can your GP recommend it?

    It has been mentioned to me once or twice, and I can't decide if it is a good idea or not. I am so tired, all the time, can barely stay awake at work in the afternoons. Obviously, I was only diagnosed with MS recently, so I always thought everyone found things this difficult! I usually battle through, but since my diagnosis, I dunno am I giving in to it more? Now that I know I have legitimate fatigue? If that make any sense?


  • Registered Users Posts: 145 ✭✭trishawisha


    Hey all, this thread is great :)
    Anyone know anything about, or try kinesiology?
    Im very sceptical, but my dads workmate knows someone who found it really helped. I spoke to the therapist yesterday, who said after seeing him a woman with MS has been cured(wtf?)
    Massive scam or may ease symptoms?

    Like Val fatigue is a big problem for me, dont know anything about Provigil though.


  • Moderators, Education Moderators, Regional South East Moderators Posts: 12,466 Mod ✭✭✭✭byhookorbycrook


    Hey all, this thread is great :)
    I spoke to the therapist yesterday, who said after seeing him a woman with MS has been cured(wtf?)
    Massive scam or may ease symptoms?
    Smells like that dr in Clare who was "curing" cancer. Will the "therapist" give you the name and no. of this woman so you can verify this?I'd imagine if somone really had cured MS we'd have heard by now:(

    By the way, pre diagnosis, I went to a "faith healer" who told me I had seven bones out in my back (physically impossible) took my €50 per session for 8 sessions and told me he had cured me. Oh how I laughed-not.


  • Closed Accounts Posts: 680 ✭✭✭MS.ing


    val444 wrote: »
    Hi all

    Has anyone here tried Provigil? Is it easy to have it prescribed? Does it need to be prescribed by a neurologist, or can your GP recommend it?

    It has been mentioned to me once or twice, and I can't decide if it is a good idea or not. I am so tired, all the time, can barely stay awake at work in the afternoons. Obviously, I was only diagnosed with MS recently, so I always thought everyone found things this difficult! I usually battle through, but since my diagnosis, I dunno am I giving in to it more? Now that I know I have legitimate fatigue? If that make any sense?

    MS =/= to fatigue! Just cause you have MS doesnt mean you automatically get fatigue, fatigue comes from disability usually, from reading your few posts I gedt the impression you werent disabled by MS in anyway [strength, balance that kind of way] I wouldnt say its the MS, your just tired? especially since you seem to be saying it has always been like that.


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  • Registered Users Posts: 145 ✭✭trishawisha


    Smells like that dr in Clare who was "curing" cancer. Will the "therapist" give you the name and no. of this woman so you can verify this?I'd imagine if somone really had cured MS we'd have heard by now:(

    By the way, pre diagnosis, I went to a "faith healer" who told me I had seven bones out in my back (physically impossible) took my €50 per session for 8 sessions and told me he had cured me. Oh how I laughed-not.

    The therapist told me he would give me the womans number, after checking with her that its ok. My parents are mad for me to give it a go, dont have the money to do it right now, so they insisted they would pay. So Im going along next tuesday €60 for one hour.
    I have a feeling 1st appointment will be assessing and then in order to make any difference you'll need about 10 sessions(€600) :eek:
    Im willing to go along to the first one, but am extremely wary. Ill report back to what after.


  • Registered Users Posts: 110 ✭✭val444


    Um, I know I am only learning about this, and I am open to correction, but my neurologist seemed fairly certain that I was suffering from what she called primary fatigue. Apparently secondary fatigue is caused by symptoms, but primary fatigue is simply caused by "the result of the disease process itself, and is caused by demyelination in the central nervous system."

    Also I am pretty sure that falling asleep at ridiculous times when sleeping normally at night, is classed as more than just tired? I dunno, I have several symptoms at the moment, and sure they are tiring, but the fatigue I am talking about is more sleepiness?


  • Registered Users Posts: 6,892 ✭✭✭bizmark


    well i decided to go on a holiday off fir a few weeks next month half way across the planet im not currently on anything so im a little scared of something happening but hey thats what travel insurance is for ..

    First hoilday by myself ms can kiss my ass


  • Registered Users Posts: 11 sillymare82


    I'm new to this so hope im doing it right, its great to fine a thread where people are talking about recent experiences. My sister has recently being diagnosed with RRMS and is currently on Rebif injections 3 times a week she is also getting vitamin B12 injections weekly at the moment. Currently she is getting on well with the injections and since January 2011 she hasnt had any episodes thank god, her last was optic neuritis, which she fully recovered from thankfully!
    She gets very tired easily and has a job where she is continuously on her feet so that doesnt help but she is dealing with the tiredness. Her biggest problem at the moment are hot flushes which she is experiencing frequently, has anyone encountered these and if so is there anything which can help them?
    Also are there vitamins which she should be taking, what about diet and exercise? She hasnt been given any information on either...
    Would be very grateful for any information or shared experiences which you may have


  • Moderators, Education Moderators, Regional South East Moderators Posts: 12,466 Mod ✭✭✭✭byhookorbycrook


    I take vit D and Udo's oil capsules( got them on my LTI book.)I have a thing called a "chillow" that goes into the pillow slip for night times. The sweats may be caused by the rebif,so taking paracetemol helped me with the flu-like symptoms when I was on the betaferon.


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  • Registered Users Posts: 11 sillymare82


    I take vit D and Udo's oil capsules( got them on my LTI book.)I have a thing called a "chillow" that goes into the pillow slip for night times. The sweats may be caused by the rebif,so taking paracetemol helped me with the flu-like symptoms when I was on the betaferon.

    Thanks byhookorbycrook, she takes paracetamol before taking the rebif n hasn't had flu symptoms so far thankfully, injects just before bed! The flushes started before the injections so seem to b a symptom of the MS rather than the meds we think! Will investigate the "chillow", tks again


  • Registered Users Posts: 131 ✭✭outnumbered82


    I have been recently diagnosed with Ms and have been taking Rebif, the first month was fine no side effects but then as the dose went up i stared getting chills for hours during the night nothing i would do would make me warm, thank god that has stopped now i am getting head aches and nausea the next day after i take the Rebif. Is this normal everyone i ask who doesnt have Ms doesnt seem to understand and thinks it must be normal if its happening.
    I really want to stop taking the Rebif as its making me feel worse, i was tired b4 taking it but now im tired all the time and feel sick, do these side effects stop?


  • Registered Users Posts: 131 ✭✭outnumbered82


    I have been recently diagnosed with Ms and have been taking Rebif, the first month was fine no side effects but then as the dose went up i stared getting chills for hours during the night nothing i would do would make me warm, thank god that has stopped now i am getting head aches and nausea the next day after i take the Rebif. Is this normal everyone i ask who doesnt have Ms doesnt seem to understand and thinks it must be normal if its happening.
    I really want to stop taking the Rebif as its making me feel worse, i was tired b4 taking it but now im tired all the time and feel sick, do these side effects stop?


  • Registered Users Posts: 145 ✭✭trishawisha


    Hi outnumbered82, bad luck about the side effects.
    I would talk to your neurologist to see if this type of side effect is something you are expected to live with or maybe you could try something else.
    Im on copaxone and even though its a massive pain in the ass injecting every day, there are no side effects(besides the injection sites going hivey-not all the time though)
    Iv been on it since April, havent been on any others so can't compare.
    I hope it gets better for you :o


  • Registered Users Posts: 131 ✭✭outnumbered82


    Thanks for the suggestion, when i spoke with my nurse she said it was normal and to take pain killers and keep a note of how im feelng after since its only a few months. Hoping they will pass soon so i can back to normal :)


  • Registered Users Posts: 145 ✭✭trishawisha


    Hi all I just wanted to come back and relay about the "newly diagnosed" seminar in cork city a few weeks back.

    It was me and my very gracious boyfriend - he was not looking forward to spending the day with strangers!. There was about 30 people there, half of which were diagnosed recently.

    We spent time talking altogether for a while, then we were split up into two rooms. All the MSers in one, all the partners in another.
    We were then broken into groups and given topics to talk about, all relating to our diagnosis. This for me was great as the two guys I was with were as heartbroken as I was about the diagnosis, and the uncertainty about the future. It was great to actually talk to real people about it, as I dont know anyone personally who has it. We were then brought back together and our answers were compared. It was very interesting to able to look at things from partners viewpoint, I probably had not being doing that alot since my diagnosis.

    Then after lunch Dr Sweeney Consultant Neurologist in CUH came along and gave a very informative talk, and he spoke about the possibility of there being up to 11 drug possibilities within the next 5 years!

    After that came a couple who had attended the newly diagnosed seminar 3 years before to relay their experiences, which was very sweet and funny and made you think things aren't so bad actually.

    Most of the day was very informal,just when Dr Sweeney was talking that it was serious. Everyone looked "normal" and there was no scary wheelchairs there that I had been worrying about. We came away from the day really happy we went. I would highly recommend anyone whos just been diagnosed and feeling a bit lost to contact the MS society. There is no push to get you to attend the meetings only if you want to but there are really good things going on like the newly diagnosed seminars. While there I was signed up for physiotherapy, for 6 weeks, something I would not have thought to do for myself.

    Just on a side note I went to a Kineseologist 2 weeks ago and have yet to make up my mind. He reckons I dont have MS at all, but have mercury poisoning from fillings. I dont really believe in all that but there are alot of people who believe in mercury poisoning....so I am still undecided. He gave me your ones number who he said he "cured" but Im suspicious about it as she could be his sister or something and I wouldnt have a clue.
    Ok that is all thanks for reading


  • Registered Users Posts: 7,065 ✭✭✭Fighting Irish


    http://www.doctoroz.com/videos/montels-own-procedure
    Montel Williams shares his experience of undergoing an experimental procedure(CCSVI) for multiple sclerosis


  • Registered Users Posts: 131 ✭✭outnumbered82


    Does anyone else get pain in there feet. I am getting pains in my right foot, i cant put it flat down at the moment, i seem to be walking on my tippy toes on my right foot. the pain is going from my arch down to my heel. this happened b4 a few months ago and i had it check out by a "foot doctor" and she said it wasnt my arches. Sorry for the long winded question but was wondering if ms and the pain in my foot could be related?

    At the moment i feel like i cant tell the difference between stand alone pain and ms pain!!


  • Moderators, Education Moderators, Regional South East Moderators Posts: 12,466 Mod ✭✭✭✭byhookorbycrook


    yes, I have a lot of pain in my legs and feet. Wonder if your leg muscles are in spasm and that's why you can't put your foot down flat?Talk to your gp or neuro.Gentle stretching like touching your toes may help loosen you up.


  • Registered Users Posts: 131 ✭✭outnumbered82


    if my leg was in spasam would it hurt. my pain started in my back then the next day it was in my foot. today was the worst day i had foot pain nausea and head aches hoping it will all pass soon


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  • Moderators, Education Moderators, Regional South East Moderators Posts: 12,466 Mod ✭✭✭✭byhookorbycrook


    if my leg was in spasam would it hurt. my pain started in my back then the next day it was in my foot. today was the worst day i had foot pain nausea and head aches hoping it will all pass soon
    Ah poor you. yes, spasm hurts!!


  • Registered Users Posts: 131 ✭✭outnumbered82


    Was able to go for a walk today so it must be getting better :)


  • Registered Users Posts: 41 LittlemsSkelly


    Hello all, I am truly amazed this thread is still going....delighted but amazed. So I am officially in my first relapse a year to the day after receiving my dx. Although I have to say it has a nice little cyclic feel to it, like now the first year is over, everything else can begin if you know what I mean :rolleyes: Or maybe I have just gone completely mad which is the more likely possibility.....

    The Optic Neuritis is back with gusto, have the oh so stupidly titled 'MS Hug' in my mid riff and leg which feels like a baby kicking??? Honestly, who hugs a leg? Should be called the MS 'we're gonna screw with you the day before you have to go in for a meeting with your dissertation supervisor', but I digress....;) So, neuro freaked, off all my meds in the New Year, another MRI and an entirely new treatment plan. But aside from the eye I feel absolutely fine so I don't know if they're just shot-gunning treatment because I'm oh so loveable and cute, or because I might be that 2 in 10 that has the severe form of the disease. Doubtful given the symptoms, but always a possibility I suppose, I'll have to wait for the MRI.
    So, how is everyone doing? All the MS'ers doing well I hope? :)


  • Moderators, Education Moderators, Regional South East Moderators Posts: 12,466 Mod ✭✭✭✭byhookorbycrook


    Treatment is essential, keep the thing at bay.I regret not going on Tysabri sooner.
    As to "hugs", people look at me strangely as I explain that I am digging my knuckles hard into my ribs to "ease" pain :D:D

    Off for Tysabri on Sunday again, had two months off due to abscess etc . jst back since last month and am stiffer and slower without it,so I'll take my chances with PML!!


  • Registered Users Posts: 41 LittlemsSkelly


    Aren't our lives just oh so glamorous? I just know people envy us...:rolleyes: The bruises, abscesses, chills and aches, absolute sex on legs....
    My neuro said they started off conservatively, but since this is the second bout of ON in 8 months, first official relapse, they're going to go more aggressive this time. Looking forward to it, I love a challenge ;)
    Is Tysabri the infusion drug?


  • Moderators, Education Moderators, Regional South East Moderators Posts: 12,466 Mod ✭✭✭✭byhookorbycrook


    Yes, Tysabri is infusion,I have a long drive to get mine,but at least it's on a Sunday.


  • Registered Users Posts: 131 ✭✭outnumbered82


    What did you start taking once you were told you had ms i was told rebif was the best and had some side efects but not to much to handle!! How wrong they were. they offered to change me to something else but made that drug sound worse then the rebif. Im only 3 months on the drugs so dont no about changing it


  • Registered Users Posts: 110 ✭✭val444


    Hi all, I have gotta make my decision about which drug to try by tomorrow morning. I have watched all the DVDs, read loads about each, etc, and I am kinda thinking Copaxone. I know most people will think I am mad, volunteering to inject myself daily, but I think the more often I do it, the faster it becomes routine, and at least I wouldn't find myself dreading one particular day every week? Thoughts?


  • Moderators, Education Moderators, Regional South East Moderators Posts: 12,466 Mod ✭✭✭✭byhookorbycrook


    Val. my neuro says Tysabri is given now in some countries as the first drug, might be worth asking what the story is for you?I was on betaferon at first.Injecting every 2nd day, not fun, but do-able.


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  • Registered Users Posts: 2,091 ✭✭✭BengaLover


    Ok so, my husband is a sufferer, with wide range of intermittent and ongoing symptoms, and I was browsing one day and found out about SERRAPEPTASE..
    Its an enzyme that the silkworm uses to break down the shell to get out of it,, and is being called the miracle enzyme, so i decided what have i got to lose, research shows that it can break down the plaque on the nerve endings and help a range of symptoms..
    Aside from that he also has severe cervical spondylitis and the Serrapeptase is claimed to help other pain too, the link is here for you to look at, http://www.serrapeptase.info/category/multiple-sclerosis/
    and I ordered some from a site in uk called Health Spark, as you cant get it here. Within 2 weeks of a high dose his symptoms improved radically, ok, so hes not cured by any means, but some relief was got, along with a high dose of EPA alongside it.
    Strange that its widely used in European countries but people here have never heard of it.
    Hope this can help some of you in some way, its not too expensive either, and the site delivers within days of ordering. (about 12.99 i think?)


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