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MS in all its glory

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    #2372
    byhookorbycrook
    Moderators, Education Moderators, Regional South East Moderators Posts: 12,481 Mod ✭✭✭✭byhookorbycrook


    piplip87 wrote: »
    Was with my OH at her neuro appointment on Wednesday. She is on Tasarbri.


    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 ?

    Tysabri wouldn't be given in a primary care centre, I'd think. It has to be given under very strict guidelines and in any case, I wouldn't be happy with someone unfamiliar with me (and it) trying to infuse me.


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    #2373
    cj maxx
    Registered Users Posts: 13,500 ✭✭✭✭cj maxx


    It's only this evening that I heard a doctor describe' underlying conditions' re Corona. And yes MS is one :(


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    #2374
    tinofapples
    Registered Users Posts: 2,957 ✭✭✭tinofapples


    cjmc wrote: »
    It's only this evening that I heard a doctor describe' underlying conditions' re Corona. And yes MS is one :(

    First I've heard of MS been at risk but it seemed likely all along given that some/most of us have compromised immune systems.


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    #2375
    Salmotrutta
    Registered Users Posts: 99 ✭✭Salmotrutta


    It's certainly causing a lot of stress here. There is some info on Twitter - use #MScovid19 . A few docs sharing anecdotal evidence of patients on various DMTs and their experience.. Mostly good from the few I have seen. But definitely immune compromised need to be very careful. Our family are avoiding all outside contact for as long as we can. I plan to talk to my MS nurse too for advice.


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    #2376
    eimsRV
    Registered Users Posts: 224 ✭✭eimsRV


    I had a call from my neurologist in Beaumont this morning ahead of a scheduled appointment next week. She said they are expecting to shut the clinics end of this week. The MS nurses likely being redeployed to a&e.
    I'm on a DMT, mavenclad since december. She said when I hear about talk of vulnerable people, thats me as I'm severely immunocompromised due to the DMT. I'd already been staying in with my family, but she said I shouldn't even go to the shops. Get stuff delivered or have someone else go. A letter is being sent next week with more info to those on DMTs she said. I was pretty shaken after it, but it just confirmed what I already guessed that I'd be isolating for a few weeks at least.


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    #2377
    Nigel Fairservice
    Registered Users, Moderators, Regional Abroad Moderators Posts: 2,186 Mod ✭✭✭✭Nigel Fairservice


    I'm still going to work and have been putting in long hours. My partner and my family aren't really comfortable with me continuing to go. Not really sure if I should be going or not but no one has told me not to (HR know about my condition).


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    #2378
    adam88
    Registered Users Posts: 1,599 ✭✭✭adam88


    Nigel Fairservice wrote: »
    I'm still going to work and have been putting in long hours. My partner and my family aren't really comfortable with me continuing to go. Not really sure if I should be going or not but no one has told me not to (HR know about my condition).

    I’m in the same boat. I’ll be working in the middle of it once it goes tits up


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    #2379
    byhookorbycrook
    Moderators, Education Moderators, Regional South East Moderators Posts: 12,481 Mod ✭✭✭✭byhookorbycrook


    I think the DMT is more of a risk factor than "just" having MS. Ironically, Tysabri seems to be one of the "safer" DMTS.
    https://www.msif.org/news/2020/02/10/the-coronavirus-and-ms-what-you-need-to-know/


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    #2380
    Nigel Fairservice
    Registered Users, Moderators, Regional Abroad Moderators Posts: 2,186 Mod ✭✭✭✭Nigel Fairservice


    adam88 wrote: »
    I’m in the same boat. I’ll be working in the middle of it once it goes tits up

    Ya, same here. Work wise it'll probably get worse before it gets better. I suppose we are lucky to still have jobs considering the events of the last few days.
    byhookorbycrook wrote: »
    I think the DMT is more of a risk factor than "just" having MS. Ironically, Tysabri seems to be one of the "safer" DMTS.
    https://www.msif.org/news/2020/02/10/the-coronavirus-and-ms-what-you-need-to-know/

    I believe so but we are all immunosuppressed to some extent. I pick up a couple of chest infections a year and I find them hard to shake off. Not sure how I deal with Covid 19. I'd probably shake it off but it might take longer to shift it.


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    #2381
    cj maxx
    Registered Users Posts: 13,500 ✭✭✭✭cj maxx


    Is everyone still taking their DMDs. I haven't taken my avonex in 2 weeks as I've a bit of an headache and it tends to make it worse. Anyone else on avonex?


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    #2382
    byhookorbycrook
    Moderators, Education Moderators, Regional South East Moderators Posts: 12,481 Mod ✭✭✭✭byhookorbycrook


    Avonex isn't one of the higher risk DMDS, talk to your neuro,but my opinion (not medical advice) is you shouldn't stop.
    https://www.ms-society.ie/covid-19-measures-and-cocooning

    "Within the MS community, those on the following disease-modifying therapies should cocoon:

    Alemtuzumab (Lemtrada) (If they have had second dose they should cocoon and if not they should not at this time take a second dose)
    Ocrelizumab (Ocrevus)
    Rituximab (Rituxan)
    Cladribine (Mavenclad)"


    "Those on dimethyl fumarate (Tecfidera) and Fingolimod (Gilenya) are theoretically at an increased risk though this is currently unsupported by data."


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    #2383
    Nigel Fairservice
    Registered Users, Moderators, Regional Abroad Moderators Posts: 2,186 Mod ✭✭✭✭Nigel Fairservice


    The advice seems to be to keep taking your medication. I haven't taken mine in about 4 weeks but I was going out to work up until Friday. I didn't like the idea of being out and about with a weakened immune system. I might go back on it now I'm working from home.


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    #2384
    cj maxx
    Registered Users Posts: 13,500 ✭✭✭✭cj maxx


    I'm isolating now so not meeting strangers , so might as well take it


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    #2385
    tinofapples
    Registered Users Posts: 2,957 ✭✭✭tinofapples


    I was due in for my Rituximab infusion this morning but it was decided to postpone for now by my neurology team.


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    #2386
    cj maxx
    Registered Users Posts: 13,500 ✭✭✭✭cj maxx


    cj maxx wrote: »
    I'm isolating now so not meeting strangers , so might as well take it

    Big mistake taking it in hind sight. Avonex normally doesn't take a flinch out of me, but when I have a cold / dose , like this week it's not so good . Add in thundering head aches from whiplash . Wednesday was awful


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    #2387
    Salmotrutta
    Registered Users Posts: 99 ✭✭Salmotrutta


    Was talking to my MS nurse on Monday and asked her about treatments (I'm on Gilenya). They are not starting new patients on it at the moment, but recommending existing patients to stay on our meds. Also said the anecdotal experience so far has been fairly good re MSers getting Covid19. One theory is that the immune suppression helps prevent the cytokine storm that is the big problem caused by the virus and is killing so many people - a depressed immune system may be a good thing for a change!


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    #2388
    cj maxx
    Registered Users Posts: 13,500 ✭✭✭✭cj maxx


    tinofapples wrote: »
    First I've heard of MS been at risk but it seemed likely all along given that some/most of us have compromised immune systems.

    Sorry for such a late reply, the info re. Covid19 and MS as an underlying condition I read was anyone who gets the flu shot.
    It's a very broad definition.
    Sorry if it read differently


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    #2389
    MyAccount
    Registered Users Posts: 58 ✭✭MyAccount


    cj maxx wrote: »
    Sorry for such a late reply, the info re. Covid19 and MS as an underlying condition I read was anyone who gets the flu shot.
    It's a very broad definition.
    Sorry if it read differently

    I think you are right - my GP says it's the meds rather than the the MS strictly speaking - but I may be talking rubbish

    in any event my work have told me I must stay at home - able to do 95% of stuff from home - I miss the interaction but the alternative is not great


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    #2390
    Carrie6OD
    Registered Users Posts: 324 ✭✭Carrie6OD


    Hi, I hope you are all keeping well.

    I am hoping to move house soon and need to apply for a new mortgage for the new house. We’ve been in our current house for over 12 years... pre diagnosis of MS. I am filling out forms and now see that I’ve to declare my MS. Have any of you had any issue with mortgage application because of it? Thanks in advance


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    #2391
    sarumite
    Registered Users Posts: 2,909 ✭✭✭sarumite


    MyAccount wrote: »
    I think you are right - my GP says it's the meds rather than the the MS strictly speaking - but I may be talking rubbish

    in any event my work have told me I must stay at home - able to do 95% of stuff from home - I miss the interaction but the alternative is not great

    It is the meds. Depends on the what the meds do. Lemtrada, for example, will reduce your T-cells which are used in viral response and thus you are considered immunosuppresed. Copaxane on the other hand does not impact your immune system so technically there is no impact on your ability to handle a virus.

    I am currently taking ocrevus which knocks out my B-cells. B cells, while important in response to infections, do not produce cytokines usch as interferons (which specifically target viral activity) thus I am shielding though I am less of a risk compared to those on lemtrada

    (for the record, I am not a medical doctor however I work in drug development and I understand the drugs mechanism of action and how it impacts your immune response. Please only follow the adive of a medical professional)


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    #2392
    Nigel Fairservice
    Registered Users, Moderators, Regional Abroad Moderators Posts: 2,186 Mod ✭✭✭✭Nigel Fairservice


    Carrie6OD wrote: »
    Hi, I hope you are all keeping well.

    I am hoping to move house soon and need to apply for a new mortgage for the new house. We’ve been in our current house for over 12 years... pre diagnosis of MS. I am filling out forms and now see that I’ve to declare my MS. Have any of you had any issue with mortgage application because of it? Thanks in advance

    I was approved for a mortgage after my diagnosis. It was the mortgage protection insurance that caused the problems for me. Went through a broker in the end. I vaguely remember having to get my GP to submit a letter stating I was in good health. Ended up getting approved for the insurance but at a higher premium due to the MS.


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    #2393
    Carrie6OD
    Registered Users Posts: 324 ✭✭Carrie6OD


    Nigel Fairservice wrote: »
    I was approved for a mortgage after my diagnosis. It was the mortgage protection insurance that caused the problems for me. Went through a broker in the end. I vaguely remember having to get my GP to submit a letter stating I was in good health. Ended up getting approved for the insurance but at a higher premium due to the MS.

    Thanks a million for that. I was hoping that would be the case. I just love all these little penalties that come up over the years due to having MS... like actually having MS isn’t bad enough!


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    #2394
    Nigel Fairservice
    Registered Users, Moderators, Regional Abroad Moderators Posts: 2,186 Mod ✭✭✭✭Nigel Fairservice


    Carrie6OD wrote: »
    Thanks a million for that. I was hoping that would be the case. I just love all these little penalties that come up over the years due to having MS... like actually having MS isn’t bad enough!

    The bank were actually fine with. I told the mortgage adviser in the bank about the MS when I met her first and she didn't seem to care about it. She was just mad to sell me the mortgage. The mortgage protection insurance was where it got a bit tricky but a bit of back and forth between the broker, insurance company, myself and my doctor eventually sorted it. It was Aviva that agreed to cover me.

    The little penalties are great. You can't discriminate against people on a lot of grounds in many areas of life but certain areas of insurance cover is perfectly fine!


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    #2395
    cj maxx
    Registered Users Posts: 13,500 ✭✭✭✭cj maxx


    Heading into my worst month, usually. Heat and humidity don't help me . As least I can skip the baclofen if I need to as I don't really need it during August !


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    #2396
    Deco99
    Registered Users Posts: 1,642 ✭✭✭Deco99


    https://www.breakingnews.ie/world/holy-grail-discovery-could-protect-nerves-from-ms-nerve-damage-study-1013211.html


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    #2397
    Garibaldi?
    Registered Users Posts: 445 ✭✭Garibaldi?


    This sounds like a breakthrough.


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    #2398
    cj maxx
    Registered Users Posts: 13,500 ✭✭✭✭cj maxx


    I noticed a sharp change in the weather this week and I’ve noticed it affects me . My leg was , r, stopped working . Maybe it was because I took my avonex injection in that leg but I could barely use it yesterday


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    #2399
    adam88
    Registered Users Posts: 1,599 ✭✭✭adam88


    Had a mysterious viral infection this week. My ms symptoms went absolutely bananas. Thankfully they subsided after a few days. Scary times


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    #2400
    MyAccount
    Registered Users Posts: 58 ✭✭MyAccount


    I have on going problems weaknesses in my right limbs and diplopia (double vision) since my last flare up about 3 years ago. Generally the symptoms are mild, except when I am overdoing it and are tired or stressed which normally go together.

    When things don't go away quickly, I have to step back / slow down but once I rest up things settle / improve


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    #2401
    Carrie6OD
    Registered Users Posts: 324 ✭✭Carrie6OD


    Does stress affect your MS? I’m stressed to the max at the moment with the school return (teacher) and can barely put one foot in front of the other.


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