MS in all its glory

Lollipops23 · 06-02-2020 5:32pm

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.

Fourwinds · 06-02-2020 8:33pm

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.

byhookorbycrook · 07-02-2020 12:44am

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

Crunchy Friends · 09-02-2020 6:12pm

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.

LegacyUser · 11-02-2020 12:47pm

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....

LegacyUser · 11-02-2020 1:54pm

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.

Salmotrutta · 02-03-2020 3:48pm

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?!

Lollipops23 · 02-03-2020 3:51pm

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

Salmotrutta · 02-03-2020 4:21pm

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

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.

:)

Nigel Fairservice · 02-03-2020 4:23pm

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.

Blinder · 02-03-2020 5:12pm

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)

byhookorbycrook · 03-03-2020 10:39pm

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.

Carrie6OD · 03-03-2020 11:01pm

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

byhookorbycrook · 04-03-2020 12:10am

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.

Carrie6OD · 04-03-2020 7:48am

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.

piplip87 · 06-03-2020 12:24pm

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 ?

Blinder · 06-03-2020 9:57pm

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

cj maxx · 09-03-2020 2:08pm

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

Nigel Fairservice · 10-03-2020 7:37pm

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.

Loveinapril · 10-03-2020 8:50pm

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.

byhookorbycrook · 11-03-2020 2:59pm

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.

cj maxx · 15-03-2020 9:08pm

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

tinofapples · 15-03-2020 10:00pm

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.

Salmotrutta · 17-03-2020 10:46pm

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.

eimsRV · 19-03-2020 12:25am

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.

Nigel Fairservice · 19-03-2020 1:01am

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).

adam88 · 19-03-2020 3:57am

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

byhookorbycrook · 19-03-2020 4:39pm

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/

Nigel Fairservice · 19-03-2020 10:52pm

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.

cj maxx · 31-03-2020 7:54pm

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?

byhookorbycrook · 31-03-2020 7:59pm

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."

Nigel Fairservice · 31-03-2020 9:33pm

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.

cj maxx · 31-03-2020 9:52pm

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

tinofapples · 01-04-2020 10:11am

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

cj maxx · 02-04-2020 4:31pm

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

Salmotrutta · 08-04-2020 2:29pm

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!

cj maxx · 26-04-2020 12:21pm

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

MyAccount · 26-04-2020 12:36pm

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

Carrie6OD · 07-06-2020 11:49am

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

sarumite · 07-06-2020 12:34pm

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)

Nigel Fairservice · 07-06-2020 4:41pm

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.

Carrie6OD · 07-06-2020 5:00pm

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!

Nigel Fairservice · 08-06-2020 1:24pm

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!

cj maxx · 03-08-2020 12:15am

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 !

Deco99 · 05-08-2020 2:06am

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

Garibaldi? · 11-08-2020 6:05pm

This sounds like a breakthrough.

cj maxx · 03-09-2020 10:06am

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

adam88 · 03-09-2020 8:42pm

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

MyAccount · 03-09-2020 8:55pm

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

Carrie6OD · 03-09-2020 10:02pm

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.

MS in all its glory

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