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MS in all its glory

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    #1862
    Lollipops23
    Registered Users Posts: 5,420 ✭✭✭Lollipops23


    Double post due to rage-typing


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    #1863
    Carrie6OD
    Registered Users Posts: 324 ✭✭Carrie6OD


    Lollipops23 wrote: »
    Double post due to rage-typing

    Did they give any reason??


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    #1864
    Lollipops23
    Registered Users Posts: 5,420 ✭✭✭Lollipops23


    Carrie6OD wrote: »
    Lollipops23 wrote: »
    Double post due to rage-typing

    Did they give any reason??

    Nope. Will be calling them first thing tomo to ask.


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    #1865
    ash23
    Closed Accounts Posts: 4,791 ✭✭✭ash23


    I was at the hospital last week. Latest MRI showed a lot of activity so I have to start on Lemtrada. It was a bit of a shock to be honest.
    Not quite sure what to expect. Just undergoing all the blood tests etc and will then get a date to start it.


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    #1866
    Big C
    Registered Users Posts: 943 ✭✭✭Big C


    Hi, Diagnosed 26yrs. Had mri done then none since. Anyone else ?


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    #1867
    byhookorbycrook
    Moderators, Education Moderators, Regional South East Moderators Posts: 12,498 Mod ✭✭✭✭byhookorbycrook


    ash23 wrote: »
    I was at the hospital last week. Latest MRI showed a lot of activity so I have to start on Lemtrada. It was a bit of a shock to be honest.
    Not quite sure what to expect. Just undergoing all the blood tests etc and will then get a date to start it.
    Ash, of course it's a bit of a land, but in the long run, Lemtrada seems to be very effective. I won't qualify it now as I am diagnosed too long and due to no new lesions on Tysabri ,I would not get the chance anyhow.
    And there doesn't seem to be any risk of PML with Lemtrada where there have been issues with Ritux.


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    #1868
    byhookorbycrook
    Moderators, Education Moderators, Regional South East Moderators Posts: 12,498 Mod ✭✭✭✭byhookorbycrook


    Big C wrote: »
    Hi, Diagnosed 26yrs. Had mri done then none since. Anyone else ?
    I'd expect one every 2 years at least, if you are still seeing a neuro. Are you stable?What meds are you on?


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    #1869
    Big C
    Registered Users Posts: 943 ✭✭✭Big C


    I was surprised to hear people talking about follow up mri's. I see neuro every year, secondry progressive, wheelchair full time fot 3 years. No meds


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    #1870
    ash23
    Closed Accounts Posts: 4,791 ✭✭✭ash23


    Big C wrote: »
    I was surprised to hear people talking about follow up mri's. I see neuro every year, secondry progressive, wheelchair full time fot 3 years. No meds

    Perhaps it's because yours is secondary progressive and you aren't on meds?

    I am RRMS and have an MRI every year. But I think the reason is two fold.

    One is related to the risks from the Medication, to check for PML.

    The other is to see if the medication is working rather than waiting for a relapse. There can be progression while on meds that wouldn't cause any symptoms. And progression while on a medication means it's not working effectively and needs to be changed.

    I suppose with SPMS or PPMS it might not be as necessary.


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    #1871
    byhookorbycrook
    Moderators, Education Moderators, Regional South East Moderators Posts: 12,498 Mod ✭✭✭✭byhookorbycrook


    Big C have you been suggested for Ritux?


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    #1872
    Big C
    Registered Users Posts: 943 ✭✭✭Big C


    never on any meds,


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    #1873
    Salmotrutta
    Registered Users Posts: 99 ✭✭Salmotrutta


    sugarman wrote: »
    Had a follow up scan last week after my initial diagnosis back in February and looks like everything is still the same which is good, I guess?

    He said at the moment they're still a bit reluctant to call it MS as theres only 2/3 legions or areas of demyelination, even tho all the symptoms have been ever present since the turn of the year.

    I've an appointment with the Neurologist in a few weeks, so I guess i'll find out where I go from there.

    If I was in your position, I would be keen to get diagnosed and on treatment ASAP. The new drugs are very effective, and the sooner you get on treatment the sooner the disease activity will be reduced. I had a second relapse that was quite debilitating at the time before I was put on treatment, if I had been diagnosed earlier rather than wait for more lesions on an MRI I might not have had that relapse. Some neurologists are now considering treatment following a first relapse, when previously the wisdom was to wait for multiple episodes and lesions before making a diagnosis.


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    #1874
    byhookorbycrook
    Moderators, Education Moderators, Regional South East Moderators Posts: 12,498 Mod ✭✭✭✭byhookorbycrook


    +100 to what Salmontrutta said, the thinking now is that initial damage over the first few years can bite back , big time, down the line and to hit hard with the likes of Tysabri or Lemtrada, instead of the pretty useless injectibles like Betaferon/Copaxone/Avonex etc.


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    #1875
    Carrie6OD
    Registered Users Posts: 324 ✭✭Carrie6OD


    byhookorbycrook wrote: »
    +100 to what Salmontrutta said, the thinking now is that initial damage over the first few years can bite back , big time, down the line and to hit hard with the likes of Tysabri or Lemtrada, instead of the pretty useless injectibles like Betaferon/Copaxone/Avonex etc.

    This is good advice... but not for people with ppms


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    #1876
    byhookorbycrook
    Moderators, Education Moderators, Regional South East Moderators Posts: 12,498 Mod ✭✭✭✭byhookorbycrook


    PPMS may benefit from Ritux while waiting for Ocrevus (ocrelizumab)here.


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    #1877
    Sunny Dayz
    Registered Users Posts: 5,396 ✭✭✭Sunny Dayz


    Quick q for those with MS who are in employment - has having MS impacted negatively on looking for a job, securing a job, when do you disclose that you have MS?


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    #1878
    vmb
    Registered Users Posts: 140 ✭✭vmb


    Sunny Dayz wrote: »
    Quick q for those with MS who are in employment - has having MS impacted negatively on looking for a job, securing a job, when do you disclose that you have MS?

    Good Q

    In my case they always discover when I have relapses. It's been 3 different jobs in 3 years, and they always have been very supportive.

    Now I'm working from home all the time (I work as developer), and they are being very patient with my continuous hospitalisations.

    I'm working now as contractor as is my preference, giving me more flexibility. If I am too bad I just don't work, I don't need to go to the GP.

    It is amazing, in my current position I started on Jan. Since then, I've had about 4 relapses, and now they wanted to extend my contract. I'd never imagine that.


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    #1879
    vmb
    Registered Users Posts: 140 ✭✭vmb


    I have a question

    Do you still work if you have mild optic neuritis?

    I'm having it now, with blurred vision in both eyes. It is very difficult to read the screen, I almost have to imagine the words.

    I can't have steroids, had 2 weeks ago for another relapse, and 4 times since christmas. so it is too much.

    I'm completely out of control. My MS is maligne given the relapse pattern. I am waiting for HSCT but it will take some time, and in the meantime, I am living in a succession of relapses.

    My pain is very bad, I am taking opioids, neurontin and baclofen, but they don't help too much.

    If I didn't have HSCT in the horizon, my life would be over. I'd wish I had a normal MS


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    #1880
    ash23
    Closed Accounts Posts: 4,791 ✭✭✭ash23


    Sunny Dayz wrote: »
    Quick q for those with MS who are in employment - has having MS impacted negatively on looking for a job, securing a job, when do you disclose that you have MS?

    I am in the same job I was in when I was diagnosed. I was pretty upfront about my MS and they've been pretty good about it. I think I wouldn't disclose it until I was out of my probationary period if I started a new job.
    vmb wrote: »
    I have a question

    Do you still work if you have mild optic neuritis?

    I'm having it now, with blurred vision in both eyes. It is very difficult to read the screen, I almost have to imagine the words.

    I work at a screen and took time off when I had optic neuritis as I had double vision. I also couldn't drive so would have been difficult to even get to work. I was off for about 6 weeks at that time before it resolved itself.


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    #1881
    Sunny Dayz
    Registered Users Posts: 5,396 ✭✭✭Sunny Dayz


    vmb wrote: »
    Good Q

    In my case they always discover when I have relapses. It's been 3 different jobs in 3 years, and they always have been very supportive.

    Now I'm working from home all the time (I work as developer), and they are being very patient with my continuous hospitalisations.

    I'm working now as contractor as is my preference, giving me more flexibility. If I am too bad I just don't work, I don't need to go to the GP.

    It is amazing, in my current position I started on Jan. Since then, I've had about 4 relapses, and now they wanted to extend my contract. I'd never imagine that.

    Thanks for your reply. The person in question was diagnosed with MS during their current employment, however that business is closing down. So it will be their first time facing the jobs market with it. The person is in good health, hasn't relapsed in a couple of years (touch wood) and is on meds.


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    #1882
    vmb
    Registered Users Posts: 140 ✭✭vmb


    In that situation, I wouldn't disclose anything about the MS, as it is unrelated with the job.
    In my case, even if it really affects with several absences, I do not disclose during the interviews, as it could be a red flag for some people.


    Once he/she is working, is a very personal decision. I have no problems saying it, but I only do when people closed to me.

    I don't like the sick label. In one of the jobs all people knew and it was very clear that some of then treated me as a very ill person.


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    #1883
    Lollipops23
    Registered Users Posts: 5,420 ✭✭✭Lollipops23


    Sunny Dayz wrote: »
    Quick q for those with MS who are in employment - has having MS impacted negatively on looking for a job, securing a job, when do you disclose that you have MS?

    I have changed jobs twice since diagnosis- the only time I felt impacted at all was in my last place. It was an incredibly stressful and I felt like my symptoms worsened considerably. I moved to a far less stressful environment and things are a lot better now.

    I don't disclose my condition during the hiring process. I have bit by bit let colleagues know about it. They've all been very sound about it.


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    #1884
    Carrie6OD
    Registered Users Posts: 324 ✭✭Carrie6OD


    Sunny Dayz wrote: »
    Quick q for those with MS who are in employment - has having MS impacted negatively on looking for a job, securing a job, when do you disclose that you have MS?

    I was very upfront with my bosses about my tests and subsequent diagnosis. They were very good all along and when a permanent position came up, I interviewed and got it. They knew I had MS at that stage so I was delighted they hadn't seen that as a negative. On the other hand I have not disclosed my MS to other staff. It's getting difficult to hide now with my walking but I cant face the pity!


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    #1885
    byhookorbycrook
    Moderators, Education Moderators, Regional South East Moderators Posts: 12,498 Mod ✭✭✭✭byhookorbycrook


    I've never made a secret of it , all of the school's staff , some of the parents and some of the children I would meet outside of work know . I actuallly got the diagnosis over the phone at break time!


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    #1886
    Big C
    Registered Users Posts: 943 ✭✭✭Big C


    Got a start in Co Co (when using crutches 10years with MS), clerical officer, two promotions within 4 years


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    #1887
    AilsOD
    Registered Users Posts: 70 ✭✭AilsOD


    byhookorbycrook wrote: »
    I've never made a secret of it , all of the school's staff , some of the parents and some of the children I would meet outside of work know . I actuallly got the diagnosis over the phone at break time!

    Diagnosis over the phone is so horrible. Mine was two weeks before Christmas, at 8pm (cos you know he had to finish his clinics first) while I was at choir practice! I felt so cheated that I wasn't brought into the office and sat down and the whole thing explained properly. I got quite drunk that night! That guy is also no longer my neuro.

    I've also never made a secret of the MS, I'm lucky not to have visible symptoms but I always mention it from the off cos the fatigue and the resulting brain fog have made people think I'm just lazy and stupid in the past (before dx) Being from a small place made it easier in a way, my former manager who hired me in my current job (the only job I've had since dx) already knew through local knowledge. I told the new manager on the first day I worked with him and it hasn't been an issue since.


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    #1888
    byhookorbycrook
    Moderators, Education Moderators, Regional South East Moderators Posts: 12,498 Mod ✭✭✭✭byhookorbycrook


    To be fair , it was me that pushed the neuro to tell me, she wanted to go person yo person .


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    #1889
    Carrie6OD
    Registered Users Posts: 324 ✭✭Carrie6OD


    I also got diagnosis over the phone! I knew it was cominf so saved me a trip to the hospital!


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    #1890
    AilsOD
    Registered Users Posts: 70 ✭✭AilsOD


    Well, I knew it was coming as well if I'm honest but I didn't expect a random phone call a few weeks after the LP about iv steroids (depending on health insurance which I didn't and still don't have) to be then told that she couldn't discuss why I needed iv steroids (I was so clueless in the beginning, didn't know much about the whole thing) and then being made wait for hours until the neurologist was finished his clinics and could be bothered to ring me. 8pm that night I get a phone call from a cranky neuro who stressed how very very important this steroid treatment was, I needed it immediately, until he realised I'm not insured and straight away lost interest. Told me he couldn't see me in Galway, wanted me to drive to Ennis to his other clinics, with double vision and massive fatigue, just to have a discussion. So in the end I was left terrified and confused and my GP told me not to cause trouble for the neuro, I might need him again in the future. Neither of them are my doctors anymore. This was all two weeks before Christmas. Most miserable Christmas I've ever put in.


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    #1891
    ash23
    Closed Accounts Posts: 4,791 ✭✭✭ash23


    For anyone here who has had Lemtrada, how long before you went back to work?

    I'm due to start in a few weeks and when I've looked it up I've seen anything from two weeks to 4 months for being off work. Anyone have any guidance as to whether they had to avoid crowds after treatment due to infection risk or how long it took to feel normal?

    Anything anyone who has had the treatment can give me would be much appreciated as I have no idea what to expect


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