MS in all its glory

cj maxx · 03-12-2020 11:08pm

Lollipops23 wrote: »

My annual MRI was last week and they called me this week to tell me to come in for a 1:1 with the consultant. They insisted there's nothing wrong and I shouldn't worry, but I haven't even met the consultant since I was diagnosed 5 years ago.

Can't help but worry a little bit!

I know its a dumb thing to say , but don't worry.
They have to see patients so if your MRI was fine they're only checking in and seeing if you have any questions. In my own experience the consultant will see you personally after starting dmd's then you're mostly dealt with by another doctor in the neurology department . The consultant will then personally see you again after a certain number of months/years.
I think that's how it works

Salmotrutta · 11-12-2020 3:50pm

Does anyone else get bad hand fatigue/cramp from using a computer mouse? I get cramp very easily in my hands/lower arms, and at the end of a busy day on the computer I can hardly pick up the kids sometimes. Anyone know of an ergonomic alternative to the standard mouse that's easier on the hand muscles?

Lollipops23 · 15-12-2020 6:18pm

echo beach wrote: »

I would say it is routine because you haven’t seen the consultant in so long. Are you on treatment? They might want to review it.

Telling someone not to worry is like saying, don’t think about pink elephants. You then can’t think about anything else.

So unfortunately were were all wrong- new lesion on my brain stem.

They're starting me on a new treatment- Tysabri infusion in the new year.

Trying not to dwell on it too much, hoping this one does the trick for longer than the 5 years I got out of Gilenya!

Onity · 19-12-2020 11:09pm

Salmotrutta wrote: »

Does anyone else get bad hand fatigue/cramp from using a computer mouse? I get cramp very easily in my hands/lower arms, and at the end of a busy day on the computer I can hardly pick up the kids sometimes. Anyone know of an ergonomic alternative to the standard mouse that's easier on the hand muscles?

Get yourself an ergonomic/vertical mouse - I have carpal tunnel and I can't use a traditional mouse because it hurts my hand something serious after about ten minutes. It'll look and feel really weird for the first few days but then you totally get used to it and you won't look back! You can pick them up online easily enough. I'd recommended Anker, this is similar to the one I use: Anker AK-UBA 2.4G Wireless Vertical Ergonomic Optical Mouse, 800 / 1200 /1600 DPI, 5 Buttons for Laptop, Desktop, PC, Macbook - Black https://www.amazon.co.uk/dp/B00BIFNTMC/ref=cm_sw_r_cp_api_fabc_RIN3FbV6ZKC1T

tinofapples · 11-01-2021 9:31pm

Any of ye guys have the conversation about the vaccine with any of your MS team ? I was due my Rituximab infusion tomorrow but it's been postponed for two reasons, one being with the recent rise in Covid-19 again it will leave my B cells depleted and thus me more vulnerable and secondly because it reduces B cell count it renders the vaccine less effective, possibly even pointless.

Speaking to my MS nurse it didn't sound like there will be any urgency in getting me a vaccine, so I guess we're not high on the priority list, are we ?

Loveinapril · 11-01-2021 10:18pm

I am a frontline worker and have MS. I am interested to see which one of those things gets me the vaccine first!

tinofapples · 11-01-2021 10:59pm

Loveinapril wrote: »

I am a frontline worker and have MS. I am interested to see which one of those things gets me the vaccine first!

Frontline worker I'd imagine and surely soon, as in a week or two.

is_that_so · 12-01-2021 10:24am

Posting this here as it may well be of interest to people. Very early days and just in mice but may offer real promise.

BioNTech CEO applies COVID-19 vaccine's mRNA tech to multiple sclerosis

https://www.fiercebiotech.com/research/biontech-ceo-turns-covid-19-vaccine-s-mrna-tech-against-multiple-sclerosis

Lollipops23 · 12-01-2021 10:30am

Lollipops23 wrote: »

.

Trying not to dwell on it too much, hoping this one does the trick for longer than the 5 years I got out of Gilenya!

Had my first Tysabri infusion yesterday- turns out I've become JC positive in the last 5 years, so I'll only be able to stay on this treatment for 2 years. Pain in the a*se, but sure lookit what can you do!

whatever76 · 12-01-2021 11:27am

Lollipops23 wrote: »

Had my first Tysabri infusion yesterday- turns out I've become JC positive in the last 5 years, so I'll only be able to stay on this treatment for 2 years. Pain in the a*se, but sure lookit what can you do!

Oh I am sorry to hear this - I am only recently diagnosed myself so had to look up JC virus - such a pain as you say its all so complex. Good to know at least and keep an eye on so hope all goes ok . I am starting Gilenya end of month - anything to watch out for ? I was on Techfidera but had to come off as It was not suiting me.

Martina1991 · 12-01-2021 1:34pm

This was posted in the main Covid thread but may be of interest to some here in the line of vaccinations.

https://twitter.com/DrEricDing/status/1348912741562667008?s=20

cj maxx · 18-01-2021 1:08pm

While exciting, it's not the 1st , or even 2nd time I've heard about great results in mice.
Benzotropine ( I think ) showed great things, even remylation back in '15. Still good news.

Carrie6OD · 19-01-2021 4:08pm

As if having MS wasn’t bad enough... have just been refused for new life insurance policy. Have existing insurance policy with current mortgage and applied for mortgage to move to a different house. Got full Mortgage approval but policy doesn’t carry over and 3 different insurers have refused me “because of the direct link of death from covid with an underlying condition” they will not look at changing this policy for another year! Feels very unfair. MRI has shown stable MS for the last 5 years!

adam88 · 19-01-2021 9:33pm

Carrie6OD wrote: »

As if having MS wasn’t bad enough... have just been refused for new life insurance policy. Have existing insurance policy with current mortgage and applied for mortgage to move to a different house. Got full Mortgage approval but policy doesn’t carry over and 3 different insurers have refused me “because of the direct link of death from covid with an underlying condition” they will not look at changing this policy for another year! Feels very unfair. MRI has shown stable MS for the last 5 years!

Talk to the bank. I have heard of people being able to draw down their mortgage without the insurance in place. The only thing is if you die your family have nothing

Carrie6OD · 20-01-2021 10:51am

adam88 wrote: »

Talk to the bank. I have heard of people being able to draw down their mortgage without the insurance in place. The only thing is if you die your family have nothing

Sorry, yes I know that’s a possibility. I was just pointing out the unfairness of it all. It probably makes sense to the insurers and banks but it’s just another blow in my MS journey.

echo beach · 21-01-2021 12:15am

Carrie6OD wrote: »

As if having MS wasn’t bad enough... have just been refused for new life insurance policy. Have existing insurance policy with current mortgage and applied for mortgage to move to a different house. Got full Mortgage approval but policy doesn’t carry over and 3 different insurers have refused me “because of the direct link of death from covid with an underlying condition” they will not look at changing this policy for another year! Feels very unfair. MRI has shown stable MS for the last 5 years!

It is unfair. Are they also refusing to cover everyone with diabetes or obesity? There are at the same or greater risk than you. Isn’t there an insurance ombudsman? It might be worth looking at making a complaint.

grizzcol2 · 23-01-2021 12:19pm

Guys - can i ask a question - other half has been diagnosed MS and looks like she's going to be going on to Tysabri - does anyone know if the cost of this covered by the long term illness card? thanks

Nigel Fairservice · 23-01-2021 12:20pm

grizzcol2 wrote: »

Guys - can i ask a question - other half has been diagnosed MS and looks like she's going to be going on to Tysabri - does anyone know if the cost of this covered by the long term illness card? thanks

The costs should be covered by the LTI scheme.

byhookorbycrook · 24-01-2021 4:29pm

Tysabri isn't covered by the LTI, it's funded separately through the scheme below. It's available to a limited number of public patients ( in reality) and is covered by many of the health insurance schemes, though they review the coverage every so often ( usually just a tick the box" thing.)

https://www.hse.ie/eng/services/news/media/pressrel/national-drugs-management-scheme-implemented-for-multiple-sclerosis.html

Nigel Fairservice · 24-01-2021 10:31pm

byhookorbycrook wrote: »

Tysabri isn't covered by the LTI, it's funded separately through the scheme below. It's available to a limited number of public patients ( in reality) and is covered by many of the health insurance schemes, though they review the coverage every so often ( usually just a tick the box" thing.)

https://www.hse.ie/eng/services/news/media/pressrel/national-drugs-management-scheme-implemented-for-multiple-sclerosis.html

Interesting to know, would have thought the funding would have come through the same stream.

Lollipops23 · 17-02-2021 6:08pm

Can anyone clarify whether MS is on the vaccine list for 18-34 year olds with 'chronic neurological conditions'? I know Parkinsons defo is, but just not sure if it includes us lot!

Loretogirl · 19-02-2021 12:22pm

I was taking Gilenya up to a few weeks ago, am starting Rituximab in 2 weeks time.

I noticed since I stopped Gilenya my symptoms got worse and even noticed new ones. Did this happen to anybody who changed medication and did the symptoms return to the level they were at, after a period.

Thank you.

tinofapples · 19-02-2021 12:48pm

Loretogirl wrote: »

I was taking Gilenya up to a few weeks ago, am starting Rituximab in 2 weeks time.

I noticed since I stopped Gilenya my symptoms got worse and even noticed new ones. Did this happen to anybody who changed medication and did the symptoms return to the level they were at, after a period.

Thank you.

Your MS team are going ahead with Rituximab in these times ? I was due my 4th infusion this January but it has been postponed according to the MS nurse for 2 reasons:

Having an infusion now will leave my immune system more compromised and therefore at greater risk should I contract Covid-19.
Depleting my B-cells will reduce the efficacy level of any vaccine I may receive in the coming months.

Carrie6OD · 19-02-2021 4:15pm

tinofapples wrote: »

Your MS team are going ahead with Rituximab in these times ? I was due my 4th infusion this January but it has been postponed according to the MS nurse for 2 reasons:
Having an infusion now will leave my immune system more compromised and therefore at greater risk should I contract Covid-19.

Depleting my B-cells will reduce the efficacy level of any vaccine I may receive in the coming months.

I had my infusion on Monday. They said vaccination would be fine after a few weeks. Probably won’t be getting it for a lot longer than that though.

tinofapples · 19-02-2021 4:32pm

Carrie6OD wrote: »

I had my infusion on Monday. They said vaccination would be fine after a few weeks. Probably won’t be getting it for a lot longer than that though.

The way the vaccine is being rolled out I see it being months before we get done, like during the summer possibly:(

An overcautious MS team I have perhaps

Carrie6OD · 19-02-2021 5:06pm

tinofapples wrote: »

The way the vaccine is being rolled out I see it being months before we get done, like during the summer possibly:(

An overcautious MS team I have perhaps

Me too. Hopefully early summer though but I’m not keeping my hopes up.

My MS team were adamant I continue with the infusions at the right times i.e. 6 months apart. Strange the way different hospitals are working.

GreenRdBoy · 19-02-2021 6:50pm

My son is due infusion in March and was advised by St Vincents team not to take vaccine for 6 weeks before or 6 weeks after. He is a key worker (youth worker) and they were offered it for next week but he cant take it

tinofapples · 19-02-2021 10:14pm

Carrie6OD wrote: »

Me too. Hopefully early summer though but I’m not keeping my hopes up.

My MS team were adamant I continue with the infusions at the right times i.e. 6 months apart. Strange the way different hospitals are working.

They ensured me that it was effective up to 12 months

adam88 · 20-02-2021 4:45pm

Loretogirl wrote: »

I was taking Gilenya up to a few weeks ago, am starting Rituximab in 2 weeks time.

I noticed since I stopped Gilenya my symptoms got worse and even noticed new ones. Did this happen to anybody who changed medication and did the symptoms return to the level they were at, after a period.

Thank you.

Can I ask why did you go off Gilenya. It’s a known fact that stopping Gilenya will cause disease relapse and/or new symptoms. I’m in it 2.5 years and tolerating it well. I’d be frightened to go off it now

Fourwinds · 23-02-2021 12:27pm

I was taken off Gilenya because I was one of the people that developed squamous carcinoma and put on Tysabri nearly 3 years ago my Neuro was of the opinion anything else would be a backward step. I haven’t had any new lesions or any active ones in that time. The infusion every 28 days was the only problem as it’s very hard to work or organise holidays then we have Covid to deal with and after the first lockdown and Hosptial’s got very busy again I asked to change meds to every 6 months to avoid the place as much as possible. After a number of tests it turns out I have latent TB which must be sorted out first with a 9 month treatment of antibiotics. Just shows how funny life can be doing my best to avoid the place has led to me being in and out more often. So if I could I would love to be back on Gilenya it was so easy to deal with.

Lollipops23 · 23-02-2021 1:00pm

Was in for my second Tysabri infusion yesterday- have to say, I was absolutely floored afterwards. Spent the afternoon snoozing on the sofa!

My neuro nurse was chatting away to me and she said she reckons those with neuro conditions (us, Parkinsons, epilepsy etc) will be jabbed April/May time. Gave me hope!

byhookorbycrook · 24-02-2021 1:29am

Lollipops23 wrote: »

Was in for my second Tysabri infusion yesterday- have to say, I was absolutely floored afterwards. Spent the afternoon snoozing on the sofa!

My neuro nurse was chatting away to me and she said she reckons those with neuro conditions (us, Parkinsons, epilepsy etc) will be jabbed April/May time. Gave me hope!

Looking at the revised schedule, people with MS are right down the line , unless they are on meds like cladribne, Ritux, Ocre and Lemtrada . Desperately disappointed here . I’m a primary teacher , no possibilities of keeping children even 1 m away .

Lollipops23 · 24-02-2021 10:27am

byhookorbycrook wrote: »

Looking at the revised schedule, people with MS are right down the line , unless they are on meds like cladribne, Ritux, Ocre and Lemtrada . Desperately disappointed here . I’m a primary teacher , no possibilities of keeping children even 1 m away .

Where are you seeing that??

Nigel Fairservice · 24-02-2021 3:08pm

Lollipops23 wrote: »

Where are you seeing that??

https://www.gov.ie/en/press-release/b44b2-minister-donnelly-announces-update-to-vaccine-allocation-strategy/

It seems people with neurological illnesses than can cause serious breathing difficulties will be moved to cohort 4 eg. motor neuron disease.

Also moved to cohort 4 under immunocompromised:

Severe immunocompromise due to disease or treatment, for example, Transplantation: - Listed for solid organ or haematopoietic stem cell transplant (HSCT) - Post solid organ transplant at any time - Post HSCT within 12 months Genetic diseases: - APECED** - Inborn errors in the interferon pathway Treatment: - included but not limited to Cyclophosphamide, Rituximab, Alemtuzumab, Cladribine or Ocrelizumab in the last 6 months.

Cohort 5, neurological illnesses that can significantly compromise respiratory function and/or the ability to clear secretions eg. Parkinson's disease, cerebral palsy.

Nigel Fairservice · 24-02-2021 3:14pm

byhookorbycrook wrote: »

Looking at the revised schedule, people with MS are right down the line , unless they are on meds like cladribne, Ritux, Ocre and Lemtrada . Desperately disappointed here . I’m a primary teacher , no possibilities of keeping children even 1 m away .

I think it's mad teachers aren't further up the priority list. My sister is a primary teacher. From Monday she will be back in a room with 20-25 kids and a special needs assistant. The kids she teaches are too young to understand social distancing. I have been working from home for months as has my partner. I only come into contact with people once a week when I do the shopping. I'd rather my sister be vaccinated before me.

adam88 · 25-02-2021 3:11pm

Fourwinds wrote: »

I was taken off Gilenya because I was one of the people that developed squamous carcinoma and put on Tysabri nearly 3 years ago my Neuro was of the opinion anything else would be a backward step. I haven’t had any new lesions or any active ones in that time. The infusion every 28 days was the only problem as it’s very hard to work or organise holidays then we have Covid to deal with and after the first lockdown and Hosptial’s got very busy again I asked to change meds to every 6 months to avoid the place as much as possible. After a number of tests it turns out I have latent TB which must be sorted out first with a 9 month treatment of antibiotics. Just shows how funny life can be doing my best to avoid the place has led to me being in and out more often. So if I could I would love to be back on Gilenya it was so easy to deal with.

How did they detect the squamous carninoma??? I’m in Gilenya 3years now and I’ve ever been checked

Fourwinds · 26-02-2021 12:48am

In regards how it was discovered I had what I thought was a pimple on my back that just would not pop and became sore in the shower if it wasn’t covered with a plaster so I went into a specialist which turned out to be my Neuro’s uncle so I asked him to talk with him long story short they started mapping my body and as I was in having my 4th one surgically removed he told me that I was being taken off Gilenya as 1 in something like 100000 developed these growths but there’s also similar number to My current treatment (which only my MS nurse told me)

cj maxx · 26-02-2021 2:08pm

These last few weeks ,my 'bad' foot has felt a stone weight ! I've never noticed it this heavy before

whatever76 · 03-03-2021 1:15pm

Sorry if a bit off topic - I need to renew car insurance and just recently diagnosed. I know I need to notify this now when getting quotes - just wondering what peoples experiences have been ? Did it make much of a difference to the cost ? Health wise I am good currently and on Gilenya.

cplwhisper · 03-03-2021 3:57pm

whatever76 wrote: »

Sorry if a bit off topic - I need to renew car insurance and just recently diagnosed. I know I need to notify this now when getting quotes - just wondering what peoples experiences have been ? Did it make much of a difference to the cost ? Health wise I am good currently and on Gilenya.

1st you have to update the driver license dept so ndls or dvla depending where u live.
Then you contact your insurer and provide the expiry date on the car category of licence along with the code applied to that section. 101 is code on Irish license.
That’s it, no additional charge, once you are deemed fit to drive the insurer can’t load your policy as that’s grounds of discrimination.

if you have to adapt your car due to your MS then that is a material fact that you will have to advise your insurer.

Went through this in ‘15 and I too on Gilenya. Keep good and don’t worry

whatever76 · 03-03-2021 7:02pm

thx so much CPLWHISPER - I didn't even know I needed to update drivers Licence - DOH ! Will get that going now as I guess best keep compliant .. painful !! Good news at least that it should not impact premium

cplwhisper · 03-03-2021 9:20pm

whatever76 wrote: »

thx so much CPLWHISPER - I didn't even know I needed to update drivers Licence - DOH ! Will get that going now as I guess best keep compliant .. painful !! Good news at least that it should not impact premium

There should be no cost for updating licence with code.
You might need note from Doc to deem you fit to keep driving. Depends on your meds but should be quick reply from doc

MyAccount · 04-03-2021 6:44am

Same experience here as other posters, ie no impact on insurance premiums (for motor).

Question asked by insurance co went along the lines of "Do you suffer from any illness or condition that must be notified to the relevant licensing authority".

MS is one (of many) specifically named conditions the must be notified to the NDLS (don't know the situation re NI / UK or other places), so the correct answer to that Question is yes, but my licence is valid.

I assume that the insurer is assessing risk based on the fact tthe NDLS will only renew the licence on the basis of a medical professionals certification, so on that basis you are "fit to drive" etc. The key therefore is to ensure that inform the NDLS. The NDLS will only (in my experience) issue a three year licence, and will require a medical certificate to do so.

My concern would be that if you don't advise the NDLS that in the event of a claim the insurers my refuse to honour a claim on the basis that you were not validly licenced. Morale of the story, tell the NDLS and make sure you have a valid licence.

The process is far from difficult, but a bit "clunky" / potentially slow as you that additional step(s). The biggest frustration here was, it took me over two months last year to get the certificate from my neuro, despite hounding his secretary almost weekly, and after that once the "so and so" signed the certificate, much to my annoyance wanted €75 before releasing it - I was fuming, but c'est la vie

Lollipops23 · 04-03-2021 10:02am

I had my second infusion of Tysabri 2 weeks ago and developed a UTI this week...any chance the two are connected or just a coincidence? Luckily I got to a doc fairly early and started antibiotics before it developed too much, but it's the last thing I bloody needed!

Salmotrutta · 08-03-2021 3:40pm

So according to MS Ireland on facebook, those of us not on the medications listed for high priority vaccination have now been deemed not at increased risk at all, and bumped back down the priority list for vaccination, to whatever age group or other cohort we are in regardless of MS. FFS!

Lollipops23 · 08-03-2021 3:43pm

Salmotrutta wrote: »

So according to MS Ireland on facebook, those of us not on the medications listed for high priority vaccination have now been deemed not at increased risk at all, and bumped back down the priority list for vaccination, to whatever age group or other cohort we are in regardless of MS. FFS!

Ok so I spent the morning on the phone with my neurology nurse in the Mater, followed by MS Ireland.

My nurse said MS Ireland have no reason to think that, and that she fully expects us to be in cohort 7. Nothing has been said to suggest otherwise.

MS Ireland were interested that my nurse said that, and told me they'd call me back. That was at 10am and I'm still waiting.

They're talking sh*te lads. Don't panic!

whatever76 · 08-03-2021 3:45pm

MyAccount wrote: »

Same experience here as other posters, ie no impact on insurance premiums (for motor).

Question asked by insurance co went along the lines of "Do you suffer from any illness or condition that must be notified to the relevant licensing authority".

MS is one (of many) specifically named conditions the must be notified to the NDLS (don't know the situation re NI / UK or other places), so the correct answer to that Question is yes, but my licence is valid.

I assume that the insurer is assessing risk based on the fact tthe NDLS will only renew the licence on the basis of a medical professionals certification, so on that basis you are "fit to drive" etc. The key therefore is to ensure that inform the NDLS. The NDLS will only (in my experience) issue a three year licence, and will require a medical certificate to do so.

My concern would be that if you don't advise the NDLS that in the event of a claim the insurers my refuse to honour a claim on the basis that you were not validly licenced. Morale of the story, tell the NDLS and make sure you have a valid licence.

The process is far from difficult, but a bit "clunky" / potentially slow as you that additional step(s). The biggest frustration here was, it took me over two months last year to get the certificate from my neuro, despite hounding his secretary almost weekly, and after that once the "so and so" signed the certificate, much to my annoyance wanted €75 before releasing it - I was fuming, but c'est la vie

thanks so much for your info also - glad I checked in on it. I didn't know about the License update needed so getting form signed by GP tomorrow and got appt for license update in 2 weeks time as all booked up before then! Insurance are notified and they are good to proceed once they see the form . They assured make no difference to my premium.

byhookorbycrook · 10-03-2021 9:42am

Lollipops23 wrote: »

Ok so I spent the morning on the phone with my neurology nurse in the Mater, followed by MS Ireland.

My nurse said MS Ireland have no reason to think that, and that she fully expects us to be in cohort 7. Nothing has been said to suggest otherwise.

MS Ireland were interested that my nurse said that, and told me they'd call me back. That was at 10am and I'm still waiting.

They're talking sh*te lads. Don't panic!

Well, I rang GP to see what kind of time frame . Wait for it, I’m not on her list .People with MS to be done under the hospital, apparently . Neuro had heard nothing about this . HSE Live said it was up to GP and to change GPs .

Have a look at section 4 in this
https://icgp.newsweaver.com/icfiles/1/44515/232433/6532549/9cb070f9f37b4305342329fa/hse%20cco%20to%20gps%20gp%20trainees%20%20%20-%20covid-19%20vaccine%20programme%20update%205.ma_1.pdf

Some MS-ers like those who had Lemtrada, , Ritux etc higher priority than the rest of us - see photo

Lollipops23 · 10-03-2021 11:28am

byhookorbycrook wrote: »

Well, I rang GP to see what kind of time frame . Wait for it, I’m not on her list .People with MS to be done under the hospital, apparently . Neuro had heard nothing about this . HSE Live said it was up to GP and to change GPs .

Have a look at section 4 in this
https://icgp.newsweaver.com/icfiles/1/44515/232433/6532549/9cb070f9f37b4305342329fa/hse%20cco%20to%20gps%20gp%20trainees%20%20%20-%20covid-19%20vaccine%20programme%20update%205.ma_1.pdf

Some MS-ers like those who had Lemtrada, , Ritux etc higher priority than the rest of us - see photo

MS Ireland called me back- so it turns out they have no actual source for what they posted, and it was pure speculation on their part. I told them to clarify that in the post of remove it, as they'd caused mass hysteria with their irresponsible post.

They may well tweak things further down the line, but the message is that they DON'T KNOW YET.

ETA: I have no issue not being in cohort 4/'very high risk', I just want to be in cohort 7/'high risk'. MS Ireland were claiming that us MSers who don't qualify for the former, also no longer qualify for the latter.

Salmotrutta · 10-03-2021 12:44pm

Lollipops, thank you for following up with them. And that is f***ing ridiculous on their part. So irresponsible. And all the people who replied to their post on FB got a bland copy-paste reply about them continuing to engage with neurologists.
I'm same as you, just want to be in cohort 7 as promised.

byhookorbycrook was that for cohort 7 you were enquiring, and the GP didn't have you on their list? That is worrying...

MS in all its glory

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