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MS in all its glory

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    #2342
    Cream2000
    Registered Users Posts: 15 ✭Cream2000


    Hi Everyone. Question I am hoping someone can help me with: Has anyone been able to get their Neuro to give a prescription for medicinal cannabis for MS? I saw my neuro recently and we talked about Simon Harris passing it for MS but my neuro said he knows its is available but the neuros were not given a protocol for giving it to people with MS. He said he would not know what or how much to prescribe so he couldnt give it to me. I am trying to find someone who gets it now for MS so I can give my neuro the details. Thanks for any help you can give!


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    #2343
    bread
    Registered Users Posts: 21 ✭bread


    eimsRV wrote: »
    Has anyone gone through the process of getting life insurance recently? I’d love to move house, and seems like the biggest hurdle is getting life insurance cover in place. Any tips?

    Hi, yes, i got it last year. It's double the price of a non MS person. Think they got a medical report from my neurologist.


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    #2344
    cj maxx
    Registered Users Posts: 13,610 ✭✭✭✭cj maxx


    Carrie6OD wrote: »
    My neurologist wrote a book recently (I’m sure you’ll guess who he is!) and he said in the book that his outpatients clinic is what he dreads the most in his working week!

    PM me his Name. I might want to look up the book


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    #2345
    Crunchy Friends
    Registered Users Posts: 233 ✭✭Crunchy Friends


    eimsRV wrote: »
    Has anyone gone through the process of getting life insurance recently? I’d love to move house, and seems like the biggest hurdle is getting life insurance cover in place. Any tips?

    I have. I found Lion.ie extremely helpful! I couldn't get it when buying my house as my MS was still undiagnosed. Since being diagnosed in March however I've managed to get it. It is about 3-4 times the price my other half pays for his.


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    #2346
    Deco99
    Registered Users Posts: 1,642 ✭✭✭Deco99


    eimsRV wrote: »
    Has anyone gone through the process of getting life insurance recently? I’d love to move house, and seems like the biggest hurdle is getting life insurance cover in place. Any tips?

    As said already, initially double the price and can drop to around 50% when they get medical report


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    #2347
    Carrie6OD
    Registered Users Posts: 324 ✭✭Carrie6OD


    Deco99 wrote: »
    As said already, initially double the price and can drop to around 50% when they get medical report

    Is car insurance the same?


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    #2348
    adam88
    Registered Users Posts: 1,604 ✭✭✭adam88


    Carrie6OD wrote: »
    Is car insurance the same?

    Don’t think they can put a loading on you because you have MS for car insurance.


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    #2349
    tinofapples
    Registered Users Posts: 2,957 ✭✭✭tinofapples


    adam88 wrote: »
    Don’t think they can put a loading on you because you have MS for car insurance.

    As we know, they love any excuse to load up your premium. I disclosed my diagnosis to my insurer last year and they asked was it noted on my licence, it wasn't at the time but I just renewed my licence this January so will find out later in the year if they do indeed "load" for MS patients.


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    #2350
    Lollipops23
    Registered Users Posts: 5,420 ✭✭✭Lollipops23


    adam88 wrote: »
    Don’t think they can put a loading on you because you have MS for car insurance.

    I had to get a doctor's letter the first year I was renewing with MS. Then I just had to add it to my licence when I renewed it.

    My premium is much the same as it always was!


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    #2351
    byhookorbycrook
    Moderators, Education Moderators, Regional South East Moderators Posts: 12,485 Mod ✭✭✭✭byhookorbycrook


    My husband was adding me to his policy . He was quoted x amount .When he told them about my diagnosis, the price shot up . This despite me having a “ fit to drive “ letter from my Neuro .
    This sad case may impact further on insurance for people with MS. https://www.irishtimes.com/news/crime-and-law/courts/circuit-court/driver-with-ms-who-killed-pedestrian-and-injured-three-others-jailed-1.4119505?mode=amp


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    #2352
    Lollipops23
    Registered Users Posts: 5,420 ✭✭✭Lollipops23


    byhookorbycrook wrote: »
    This sad case may impact further on insurance for people with MS. https://www.irishtimes.com/news/crime-and-law/courts/circuit-court/driver-with-ms-who-killed-pedestrian-and-injured-three-others-jailed-1.4119505?mode=amp

    I'm annoyed at this woman- it is a fact of our sh**ty conditions that we HAVE to be responsible and know when to say when regarding driving. I couldn't live with myself if I thought my pride and pigheadedness cost somebody their life. She knew damn well she was no longer fit to drive.


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    #2353
    Fourwinds
    Registered Users Posts: 15 ✭Fourwinds


    I have to say when I was diagnosed and I had to inform my insurance companies they were all happy with the doctors letters except for my daughters car they wanted letter apron letter to say I was fit to drive and at the same time my motorbike insurance wanted nothing all they said to my wife is he will know himself when to stop. It’s something the rest should do we all know what a pain in the ass this disease is and each and every one of us know our limits and we strive each and every day to keep up to it.


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    #2354
    byhookorbycrook
    Moderators, Education Moderators, Regional South East Moderators Posts: 12,485 Mod ✭✭✭✭byhookorbycrook


    I have always submitted a letter from my Neuro to insurance companies , even when they don’t look for it .


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    #2355
    Crunchy Friends
    Registered Users Posts: 233 ✭✭Crunchy Friends


    Carrie6OD wrote: »
    Is car insurance the same?

    Once my MS was diagnosed and I had my drivers licence renewed (I was only given a 3 year licence renewal) I contacted both my car insurer and health insurer to notify them of a diagnosis.

    For the car insurance I didn't even specify MS, I just told them I had been diagnosed with an LTI and gave them a copy of my new licence.

    For the health insurers, they said they didn't need to be notified at all.

    No increase in premium in either case.

    I'd be interested to see if switching to a new car insurer in the future would they load my premium.


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    #2356
    LegacyUser
    Registered Users Posts: 166,026 ✭✭✭✭LegacyUser


    Hi all,

    I've been on fingolimod since 2015 and was fine for the first few years, but for the last 2 I've almost constantly been sick (to the extent a co-worker started referring to me as typhoid Mary and people have started to annoyed with me coming in to work sick so often). I am pretty fed up of being constantly sick by now. This is my third time being stuck in bed sick since December. My MS was always mild - so much so that the first Neuro I saw didn't think I needed to be on medication. Eventually I started copaxone and once there was new MRI activity switched to fingolimod. Admittedly - for all that I know it's the fingolimod that's kept it mild all these years. I'd still like to stop taking it at this point, being sick all the time is really bringing me down. But I've seen things (fda warning) saying that when you stop taking fingolimod as your immune system recovers your MS can become worse than it ever was, that you can end up severely disabled, and that the only way to stop taking it is to switch to an even more aggressive drug. Has anyone had any experience or been told anything by their doctor about coming off fingolimod?

    Sorry for being a Debbie Downer....


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    #2357
    LegacyUser
    Registered Users Posts: 166,026 ✭✭✭✭LegacyUser


    I wanted to clarify my earlier post - my colleagues don't know I have ms so certainly being more open with people would possibly help make things less stressful, but my main issue is being sick so often.


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    #2358
    Salmotrutta
    Registered Users Posts: 99 ✭✭Salmotrutta


    Salmotrutta wrote: »
    Best of luck with it. I've been stable at 0.8 for a few years and still get plenty of colds and throat infections so I can't imagine how hard it is at 0.4.


    After all that, I've now had a sore throat/cough for most of the past 2 months that I just can't shake. Had bloods done and lymphocytes are only down to 0.7. GP just said it's a viral thing, nothing else wrong, but by God is it annoying to feel sick for so long. The corona virus thing is also worrying, if you can't shake a simple cough how is the less effective immune system going to cope if you get that?!


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    #2359
    Lollipops23
    Registered Users Posts: 5,420 ✭✭✭Lollipops23


    Last bloods showed lymphocytes are back up a bit, so here's hoping I won't be getting sick so often!

    In terms of stress management, I got engaged last week so the next year or so will be a test!!! Already getting het up over silly sh*t :D


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    #2360
    Salmotrutta
    Registered Users Posts: 99 ✭✭Salmotrutta


    Lollipops23 wrote: »
    Last bloods showed lymphocytes are back up a bit, so here's hoping I won't be getting sick so often!

    In terms of stress management, I got engaged last week so the next year or so will be a test!!! Already getting het up over silly sh*t :D


    Oh wow, congrats! Remember it is just silly sh*t when the organising gets too stressful! Best of luck with everything! Good news on the lymphocytes too. :):)


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    #2361
    Nigel Fairservice
    Registered Users, Moderators, Regional Abroad Moderators Posts: 2,197 Mod ✭✭✭✭Nigel Fairservice


    Salmotrutta wrote: »
    After all that, I've now had a sore throat/cough for most of the past 2 months that I just can't shake. Had bloods done and lymphocytes are only down to 0.7. GP just said it's a viral thing, nothing else wrong, but by God is it annoying to feel sick for so long. The corona virus thing is also worrying, if you can't shake a simple cough how is the less effective immune system going to cope if you get that?!

    I'm probably completely overreacting but I came off my medication for a while. I passed through 3 airports at the weekend and 2 planes and will be doing the same tomorrow so I wanted my immune system up and running.


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    #2362
    Blinder
    Registered Users Posts: 243 ✭✭Blinder


    Lollipops23 wrote: »
    Lymphocyte count came back before xmas, I'm at a .4 when I had been .7 consistently. Explains my run of bad health! They won't do anything unless they drop to .2, so I'm just having to grin and bear it for now.

    I'm Gilenya too. Been 0.3 for last year or more. Was told the same, about it not been a problem unless it drops to 0.2
    So i just avoid sick people if I can and keep hand sanitizer on my desk, in car at home (even before the latest conoravirus stuff)


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    #2363
    byhookorbycrook
    Moderators, Education Moderators, Regional South East Moderators Posts: 12,485 Mod ✭✭✭✭byhookorbycrook


    I'm a primary teacher so am exposed to all kinds of bugs. Because I work in very close contact with small groups, I'm quite in "the firing line," Corona isn't bothering me, even though Tysabri is classed as an immuno-suppressant. The thought of the massive rebound relapse that would happen if I came off tysabri scares me a lot more than Corona, so I'm staying on.


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    #2364
    Carrie6OD
    Registered Users Posts: 324 ✭✭Carrie6OD


    byhookorbycrook wrote: »
    I'm a primary teacher so am exposed to all kinds of bugs. Because I work in very close contact with small groups, I'm quite in "the firing line," Corona isn't bothering me, even though Tysabri is classed as an immuno-suppressant. The thought of the massive rebound relapse that would happen if I came off tysabri scares me a lot more than Corona, so I'm staying on.


    I’m a secondary teacher and 100 of my students and 10 colleagues just came back from Northern Italy. Got my 2nd ocrelizumab infusion on Friday and I’m absolutely bricking it about coronavirus. I don’t feel like I can justify taking time off work. It’s an awful situation


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    #2365
    byhookorbycrook
    Moderators, Education Moderators, Regional South East Moderators Posts: 12,485 Mod ✭✭✭✭byhookorbycrook


    Jeepers, Carrie, that's scary. I'm not one to do the "panic,everyone" type of posts, but I'd be talking to the school management about their duty of care to you.


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    #2366
    Carrie6OD
    Registered Users Posts: 324 ✭✭Carrie6OD


    byhookorbycrook wrote: »
    Jeepers, Carrie, that's scary. I'm not one to do the "panic,everyone" type of posts, but I'd be talking to the school management about their duty of care to you.

    I’d say it will go down like a lead balloon! I have emailed my neurologist to get advice so will do what he says and move on from there.


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    #2367
    piplip87
    Registered Users Posts: 2,110 ✭✭✭piplip87


    Was with my OH at her neuro appointment on Wednesday. She is on Tasarbri. The Neurologist said that although it's unknown that they are placing Tasarbri in the high risk category. He told her incase of an outbreak to:

    1) Avoid large public gatherings and Pubs.
    2) Wash hands whenever outside of the home. Use handwash as much as possible.
    3) If any symptoms present in the household, if possible go somewhere else.

    We also have a room designated in the house as an isolation room just incase. She is going completely contactless in paying for shopping. Although we did buy a new chest freezer and have it full with enough food for about 2 months. Most importantly have stocked up on vodka and chocolate.


    Basically if there is an outbreak up this way we will stay indoors and self isolate until it clears. We have my employer and the kids schools informed that if it comes to the area we will taking time off just incase.

    Anybody have any idea what they will do with infusions if there is a serious outbreak ? Could it be sent down and given under nurses supervision in primary care centres ?


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    #2368
    Blinder
    Registered Users Posts: 243 ✭✭Blinder


    Good info here re: DMTs and COVID-19

    In short it says : Don't make any changes to medication, either stopping or starting, without talking to your neuro
    https://www.mstrust.org.uk/news/update-coronavirus-covid-19-and-multiple-sclerosis

    For me, Gilenya has kept me stable for over 2 years, so not stopping until they make me :)

    Anyone else find having to be hypervigilant exhausting? I'm normally careful anyway about washing hands and hand sanitiser since my lymph nodes have been low for a while, but now I feel it's even more important
    A lot of people in and out of office every day that have travelled all over europe ( not going to change, it's the industry)

    Considering asking next week if I can mostly work remotely and limit my time in the office.
    Logically I know it's the sensible thing to do, but means revealing my condition to work, which I haven't done so far as there was no reason i needed to


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    #2369
    cj maxx
    Registered Users Posts: 13,610 ✭✭✭✭cj maxx


    Good to know that we don't have to be extra extra vigilant because of MS. Wash hands and hope for the best ! Same as everyone else


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    #2370
    Nigel Fairservice
    Registered Users, Moderators, Regional Abroad Moderators Posts: 2,197 Mod ✭✭✭✭Nigel Fairservice


    Our HR unit sent out an email today re Covid 19 and asked staff with underlying health conditions contact them to discuss work accommodations. Wasn't really sure if I should reply to it. I can't really do my job from home.


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    #2371
    Loveinapril
    Registered Users Posts: 2,329 ✭✭✭Loveinapril


    I had my usual bi- annual check up yesterday and the doctor didn't shake my hand (and mentioned it) and also said he wouldn't be doing a physical exam due to the virus. I found that pretty odd. I have to say, as of today I am getting more concerned. I have been out of work on maternity leave and only started back yesterday so now that I am back around a lot of people in a small building, I am noticing their behaviour and realising how concerned most people are.


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