MS in all its glory

whatever76

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

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

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

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

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

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

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

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

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

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...

byhookorbycrook

Salmotrutta wrote: »

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...

Yes, for the later cohort. I’m a primary teacher and work with children with additional needs in my small room . Due back face to face Monday as Medmark say I’m not “ high risk enough,” so wanted to see if there was an update as to when they hoped I might be vaccinated.

Disappointed to hear MS Ireland being irresponsible with information - but that said, the guy I rang in HSE gave the incorrect information to me as well.

ETA - it’s apparently not in the power of the GP to add someone to LTI vaccine lists , I’ve seen the same issue for other LTIs.

eimsRV

I am on Mavenclad (Cladibrine) which is included in Cohort 4. I received a text to attend for a covid vaccine today in Beaumont. However I cannot get the vaccine yet as my immunce system is still too low. I was surprised to receive an appointment so quickly.

tinofapples

I received a text message yesterday inviting me for Astrazenica tomorrow at the Mass Vancination site in Galway.

Lollipops23

tinofapples wrote: »

I received a text message yesterday inviting me for Astrazenica tomorrow at the Mass Vancination site in Galway.

Amazing, congratulations!! Can I ask if you're on one of the meds listed in cohort 4?

tinofapples

Lollipops23 wrote: »

Amazing, congratulations!! Can I ask if you're on one of the meds listed in cohort 4?

I'm on Rituximab but haven't had an infusion since last June, Jan infusion was postponed due to Covid and possibly ineffectiveness of any vaccine had I received it then.

pleh

Just got vaccine text for apptmt this week with AstraZenica in Dublin. I had to postpone tysabri apptmt as they're too close together. I'm not in cohort 4 so wasn't expecting it this early. My immune system is on the ground at the moment though as I have a few other health issues so maybe it was a clinical decision, I don't know.

Lollipops23

pleh wrote: »

Just got vaccine text for apptmt this week with AstraZenica in Dublin. I had to postpone tysabri apptmt as they're too close together. I'm not in cohort 4 so wasn't expecting it this early. My immune system is on the ground at the moment though as I have a few other health issues so maybe it was a clinical decision, I don't know.

Excellent, thrilled for you! I'm Tsyabri too, with chronic asthma working as a wingman.

Did you go through your neuro dept or your GP?

pleh

Lollipops23 wrote: »

Excellent, thrilled for you! I'm Tsyabri too, with chronic asthma working as a wingman.

Did you go through your neuro dept or your GP?

I feel ur pain I have asthma and dermatitis just in case the ms wasnt enough. The appointment came through the neurologist as far as i understand.

byhookorbycrook

Some places are now vaccinating Tysabri people . Check with your hospital .

Lollipops23

byhookorbycrook wrote: »

Some places are now vaccinating Tysabri people . Check with your hospital .

Do you mind me asking what hospitals are doing that? Just so I can name them when I ring my neuro and demand a date lol.

Fourwinds

I am on Tysabri and got my first vaccine last Friday through my Neuro/hospital (Bons Cork) the CUH is also doing it at the moment. No choice in regards the vaccine, I was given the Astra with the second shot is in 12 weeks time.

MyAccount

I’ve sent several emails to my Neuro, based in Blackrock; the silence is deafening :mad:

byhookorbycrook

MyAccount wrote: »

I’ve sent several emails to my Neuro, based in Blackrock; the silence is deafening :mad:

Ring !

MyAccount

byhookorbycrook wrote: »

Ring !

Have tried that - initially calling the Neuro's office directly, but the phone has a message stating "we are currently experiencing high call volumes, so please leave a message or sent an e-mail to ...." (that is nothing new, since pre-covid times but traditionally e-mails were responded to with 24 hours (which may involve a telecon with the neuro, so it worked, hence my frustration now)).

(I also tried calling the main reception; and they just patch you through to the Neuro's line, where the exact same message is playing ...)

Fourwinds

Not sure what’s the procedure in other places but one thing I found to be very effective was to ring the ms nurse in the hospital as I have found her to be very effective in getting things done. Just keep contacting your Doctor Neuro and MS nurse, as they say the squeaky wheel gets the oil.

MyAccount

Fourwinds wrote: »

Not sure what’s the procedure in other places but one thing I found to be very effective was to ring the ms nurse in the hospital as I have found her to be very effective in getting things done. Just keep contacting your Doctor Neuro and MS nurse, as they say the squeaky wheel gets the oil.

I don't have access to a nurse, so I'll keep hounding the Neuro.

Am hearing that GPS are doing vaccinations so have started hounding the GP's surgery as well; but they want €60 upfront for a telephone call next week has anyone had any joy in talking to their GP before I spend the money?, if only because my income has taken a hit in the last year.

Fourwinds

Hi MyAccount. I would keep my money as you could end up paying your gp for nothing it seams that they are getting very little few vaccines my own gp’s practice of 6 doctors only got 30 vaccines so far. Your Neurologist is probably the best option for now

Carrie6OD

Hi all,

Got my vaccination on Thursday. My neuro rang me to call me in for AZ vaccination for Friday. Was delighted but with the 12 week gap between doses was concerned about implications for next ocrevus infusion.

Then on Wednesday GP rang to say to come the next morning as they were doing group 4 patients. I emailed MS nurse who said she would cancel my vaccination in hospital as much better for me to do locally. Went to GP and got Pfizer vaccination, due next dose in 4 weeks which should mean no interruption to ocrelizumab schedule. No side effects whatsoever. Sore arm but flu jab was worse.

I think it’s scandalous if your neurologist’s team aren’t getting back to you. I couldn’t praise the MS nurses in Vincents enough. Literally back to me within minutes sometimes. They are amazing.

Carrie6OD

Also meant to say, I didn’t pay for anything.

MyAccount

Thanks Carrie,

Without getting into a "Party Political Broadcast" I genuinely think that the heath system in this country is totally dysfunctional.

I have to pay for everything (drugs refund scheme excepted).

When I applied for a medical card or GP card I was declined as apparently my income is too high. In fairness my ex used to be good but he hasn't paid the maintenance in nearly a year. In his defence, his business has been closed for most of the last year and he is trying to get by on the Pandemic support payment. Meanwhile I had to get a payment break from my bank on my my mortgage to simply make ends meet. Rant over