MS in all its glory

Carrie6OD · 10-04-2021 12:51pm

MyAccount wrote: »

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

That’s awful and my heart goes out to you. MS is hard enough.

MyAccount · 10-04-2021 2:16pm

Carrie6OD wrote: »

That’s awful and my heart goes out to you. MS is hard enough.

We'll get there

Lollipops23 · 12-04-2021 9:38am

Got a call Friday evening- I'm getting my jab on Fri of this week! Delighted and excited

MyAccount · 12-04-2021 9:40am

Yeaah - my GP has confirmed that I will be included in the 7th Cohort (in her opinion) - she expects that all such people will get their first shot before the end of April (assuming supply etc).

So relieved - the whole thing has me worried sick.

Thanks all for the well wishes. Now fingers and toes crossed

cj maxx · 12-04-2021 9:07pm

Lollipops23 wrote: »

Got a call Friday evening- I'm getting my jab on Fri of this week! Delighted and excited

If its the AZ one , expect to to falling asleep 8/9 hours after it. Apart from that its grand.

Lollipops23 · 13-04-2021 8:48am

cj maxx wrote: »

If its the AZ one , expect to to falling asleep 8/9 hours after it. Apart from that its grand.

Well sure it looks like it's postponed anyway with AZ being taken off under 60s....gutted isn't the word.

Loveinapril · 13-04-2021 2:47pm

Lollipops23 wrote: »

Well sure it looks like it's postponed anyway with AZ being taken off under 60s....gutted isn't the word.

I was on a list to have this one through my job. It feels like we will never be vaccinated at this stage!

Lollipops23 · 13-04-2021 2:56pm

Loveinapril wrote: »

I was on a list to have this one through my job. It feels like we will never be vaccinated at this stage!

I think the likes of us will prob still be done in the next few weeks. It's just a kick in the teeth when you're got yourself all psyched up once you've been given your date.

adam88 · 13-04-2021 3:58pm

Just my own 2 cents.

Work in healthcare so got my pfizer vaccine back in January. Second dose had me floored for a day, think really bad hangover x flu. Was horrible.

As regards to ms team, I stayed with the public system tgst diagnosed me. There’s a brilliant private hospital closer with a really good neuro team but at this point and time I’m cool with the public system. Currently rarely use them or need to use them. Thank god. I use my private insurance for speeding up mri’s alrite and my meds are covered under the drug payment scheme so all is good so far.

Don’t overlook your public system. Give them a try. You’d be surprised. Sometimes we can get very snubbery over private/public

MyAccount · 13-04-2021 6:42pm

adam88 wrote: »

Just my own 2 cents.

Work in healthcare so got my pfizer vaccine back in January. Second dose had me floored for a day, think really bad hangover x flu. Was horrible.

As regards to ms team, I stayed with the public system tgst diagnosed me. There’s a brilliant private hospital closer with a really good neuro team but at this point and time I’m cool with the public system. Currently rarely use them or need to use them. Thank god. I use my private insurance for speeding up mri’s alrite and my meds are covered under the drug payment scheme so all is good so far.

Don’t overlook your public system. Give them a try. You’d be surprised. Sometimes we can get very snubbery over private/public

Thanks for that - great to hear - I am genuinely considering moving out of the Private System - €175 everytime I want to see the Neuro, (which rarely lasts more than 5 or 10 mins), and anything and everything costs money - charges handsomely for writing repeat prescriptions despite not having go beyond his secretary, and a fee to get a form signed for my Driver License renewal, despite having seen the guy (and paid €175) less than a month prior.

All money I can't really afford, but then again, can I "afford" not to see the guy.

I am also hearing loads of you signing the praises of your MS nurses; the nurses seem to be great for routine stuff like repeat prescriptions and general sounding boards - my Neuro / the hospital I attend, don't have such a person.

In fairness though it's very nice building / premises (is that important ?!)

One Q, if I may, rightly or wrongly I have a perception that it can take many months to get an appointment in the public system? - in fairness to the private system - I can generally get an appointment within days, especially if and when things go awry / my symptoms flare up.

It doesn't happen regularly but I wouldn't want to be stuck in "no mans land" - I know I shouldn't but I worry when thing go awry, so the ability to see someone at short notice is very valuable to my peace of mind.

byhookorbycrook · 13-04-2021 8:24pm

Neuro-wise, I'm blessed. She's in a private hospital quite a long way from where I live now, but absolutely worth the monthly trip south , complete with overnight in a hotel , to get my Tysabri. She's at every infusion and nurses ( previous and present) are literally at the end of a text. I have a number of other health conditions ( "leave some for someone else," she says) and she and her nurse chase those dealing with the various issues down like terriers after a bone! My VHI plan also pays back quite a large proportion of any medical professional fees I pay so between that and the fact that Tysabri is covered each month as my my MRIs I'm a nightmare patient for VHI cost wise!

Nigel Fairservice · 13-04-2021 10:38pm

I took out medical insurance after my diagnosis. I'm serving out my 5 year wait period for pre-existing conditions at the moment. Should hopefully be covered from October onwards. I might use my insurance for my MRI scans but I'm happy to stay in the public system for my neurologist.

I was thinking of going back driving soon enough. I see that I have to complete a report when applying for a licence because I was diagnosed with MS. Can this be done by a GP or does it have to be a neurologist?

adam88 · 13-04-2021 11:41pm

Nigel Fairservice wrote: »

I took out medical insurance after my diagnosis. I'm serving out my 5 year wait period for pre-existing conditions at the moment. Should hopefully be covered from October onwards. I might use my insurance for my MRI scans but I'm happy to stay in the public system for my neurologist.

I was thinking of going back driving soon enough. I see that I have to complete a report when applying for a licence because I was diagnosed with MS. Can this be done by a GP or does it have to be a neurologist?

My GP refused to do mine after I got diagnosed over the seriousness of it. A call to my neuro team and she wanted to see me again to fill it out. I seen a member of her team and he gave me a three year form. It’s out this year. I’ll chance my own gp for it this time. She knows my symptoms have been stable since my diagnosis so hopefully she’ll save me the trouble of chasing my neuro team

Nigel Fairservice · 14-04-2021 12:06am

adam88 wrote: »

My GP refused to do mine after I got diagnosed over the seriousness of it. A call to my neuro team and she wanted to see me again to fill it out. I seen a member of her team and he gave me a three year form. It’s out this year. I’ll chance my own gp for it this time. She knows my symptoms have been stable since my diagnosis so hopefully she’ll save me the trouble of chasing my neuro team

Thanks. Was hoping my GP could do it. I think my MS nurse retired and I'm having a hard time trying to contact my neurologist at the moment for something else.

byhookorbycrook · 14-04-2021 9:00am

Nigel Fairservice wrote: »

Thanks. Was hoping my GP could do it. I think my MS nurse retired and I'm having a hard time trying to contact my neurologist at the moment for something else.

My GP does mine for driving .

€175 is very expensive for repeat visits , I would have thought ? The initial consultation is usually more expensive where I go ( 4 different consultants have me “on their books”)
I get cash back on my VHI policy and don’t forget that you can claim tax relief on your medical expenses.

I get a letter from the Neuro each year to submit to my car insurance company . The one I’m with at present didn’t look for one but I prefer to have the letter and to give them a copy , so that there is a clear paper trail on that .

MRI wise , with health insurance, I can more or less choose the time and day , I know of people who are waiting quite a while for their MRIs in the public system.

MyAccount · 14-04-2021 12:07pm

byhookorbycrook wrote: »

My GP does mine for driving .

€175 is very expensive for repeat visits , I would have thought ? The initial consultation is usually more expensive where I go ( 4 different consultants have me “on their books”)
I get cash back on my VHI policy and don’t forget that you can claim tax relief on your medical expenses.

I get a letter from the Neuro each year to submit to my car insurance company . The one I’m with at present didn’t look for one but I prefer to have the letter and to give them a copy , so that there is a clear paper trail on that .

MRI wise , with health insurance, I can more or less choose the time and day , I know of people who are waiting quite a while for their MRIs in the public system.

The initial consultation was €250 a couple of years back, and repeat visits were €150, but went up to €175 about two years ago.

My Private Health Insurance makes the MRI thing easy in fairness, but my policy doesn't cover GP or Consultants visits - I did seek increased cover last year but there is a 2 year "waiting period" for the increased cover to become available - it's bloody expensive though - approaching €2k per annum, if want the high level of coverage in respect of GP and consultants. On the balance based on the number of times I have to see the GP and / or Consultant the increase in premium will be more funded by the rebates.

Carrie6OD · 14-04-2021 1:04pm

MyAccount wrote: »

Thanks for that - great to hear - I am genuinely considering moving out of the Private System - €175 everytime I want to see the Neuro, (which rarely lasts more than 5 or 10 mins), and anything and everything costs money - charges handsomely for writing repeat prescriptions despite not having go beyond his secretary, and a fee to get a form signed for my Driver License renewal, despite having seen the guy (and paid €175) less than a month prior.

All money I can't really afford, but then again, can I "afford" not to see the guy.

I am also hearing loads of you signing the praises of your MS nurses; the nurses seem to be great for routine stuff like repeat prescriptions and general sounding boards - my Neuro / the hospital I attend, don't have such a person.

In fairness though it's very nice building / premises (is that important ?!)

One Q, if I may, rightly or wrongly I have a perception that it can take many months to get an appointment in the public system? - in fairness to the private system - I can generally get an appointment within days, especially if and when things go awry / my symptoms flare up.

It doesn't happen regularly but I wouldn't want to be stuck in "no mans land" - I know I shouldn't but I worry when thing go awry, so the ability to see someone at short notice is very valuable to my peace of mind.

I would change to public. I was in the private system and the public care I get now is far superior. Charging a person with a lifelong illness for a prescription bothers me. And if you’re in south dublin Vincent’s neurology is also in a kinda nice building!! Well it has Starbucks coffee so that’s a bonus! Ask for a referral to the public neurologist and keep your private care while you’re waiting for your appointment. I got a letter when I switched telling me it was a 5 year wait but really it only took 6 months. I get an annual appointment but whenever I needed to see him I got an appointment no problem. And the nurses are always at the end of the phone. I mostly just do my appointments with them now! My health insurance covers MRIs in a private clinic so there’s usually no waiting for them.

MyAccount · 14-04-2021 6:03pm

@ Carrie.

Thanks a mill for that. That sounds ideal, especially access to a nurse for my silly / non urgent Qs

Plus the Starbucks would be a massive bonus

discobeaker · 14-04-2021 7:33pm

Just got called today to go for the moderna vaccine on Saturday. Nervous but also Abit excited to get started. Hoping that it won't make my ms flair up but I've got nothing planned for afew days after the shot so if I've any reaction I can thankfully rest up for awhile

Hope you all are keeping safe and well

Lollipops23 · 15-04-2021 9:01am

discobeaker wrote: »

Just got called today to go for the moderna vaccine on Saturday. Nervous but also Abit excited to get started. Hoping that it won't make my ms flair up but I've got nothing planned for afew days after the shot so if I've any reaction I can thankfully rest up for awhile

Hope you all are keeping safe and well

Excellent! I'm waiting on my new appointment, fingers crossed I get a call today or tomorrow!

Lollipops23 · 15-04-2021 3:08pm

discobeaker wrote: »

Just got called today to go for the moderna vaccine on Saturday. Nervous but also Abit excited to get started. Hoping that it won't make my ms flair up but I've got nothing planned for afew days after the shot so if I've any reaction I can thankfully rest up for awhile

Hope you all are keeping safe and well

Actually, was your original appointment cancelled?

discobeaker · 16-04-2021 1:08am

Lollipops23 wrote: »

Actually, was your original appointment cancelled?

No I hadn't been called before. Doctor called me Wednesday afternoon and told me to show up on Saturday for it. Hopefully your doctor calls you soon

Salmotrutta · 17-04-2021 10:30pm

Got called in to GPs today for the Pfizer jab. Had called last week to see what the story was, secretary told me to contact my hospital as they weren't doing people with underlying conditions. Then got a text on Thursday that they were doing a "high risk Pfizer clinic" over 2 days (Fri and Sat) and I was on the standby list. Not sure why the turnaround or if the secretary was just fobbing me off, but glad it worked out anyway! Had been resigned to waiting til June for the first jab but will be fully vaccinated by late May

cplwhisper · 21-04-2021 11:59pm

Salmotrutta wrote: »

Got called in to GPs today for the Pfizer jab. Had called last week to see what the story was, secretary told me to contact my hospital as they weren't doing people with underlying conditions. Then got a text on Thursday that they were doing a "high risk Pfizer clinic" over 2 days (Fri and Sat) and I was on the standby list. Not sure why the turnaround or if the secretary was just fobbing me off, but glad it worked out anyway! Had been resigned to waiting til June for the first jab but will be fully vaccinated by late May

Not jealous..can I ask are you in ireland or elsewhere

Crunchy Friends · 23-04-2021 2:09pm

Hi all,

Is anyone here under the care of Vincent’s Hospital (public) and been called for a vaccine yet?

I’m still confused as to whether to actually expect a call or not! When the announcement re cohort 4 was made I was counting myself out assuming it was just the most extreme cases of MS, but I know of other people with MS who have been vaccinated who wouldn’t be in that ‘extreme’ category. It’s all very confusing..!

Nigel Fairservice · 23-04-2021 4:30pm

Crunchy Friends wrote: »

Hi all,

Is anyone here under the care of Vincent’s Hospital (public) and been called for a vaccine yet?

I’m still confused as to whether to actually expect a call or not! When the announcement re cohort 4 was made I was counting myself out assuming it was just the most extreme cases of MS, but I know of other people with MS who have been vaccinated who wouldn’t be in that ‘extreme’ category. It’s all very confusing..!

I think how soon you're vaccinated depends on what medication you're on.

https://www.ms-society.ie/covid-19-vaccines-and-ms

Crunchy Friends · 23-04-2021 4:52pm

Nigel Fairservice wrote: »

I think how soon you're vaccinated depends on what medication you're on.

https://www.ms-society.ie/covid-19-vaccines-and-ms

Yeah actually I do think that’s correct. It’s just confusing because the people I know who have received the vaccine aren’t on any of the meds that you need to time the vaccine with. I’m on Tecfidera, others I know who have received it are on Tysabri etc. I’m probably looking for logic where none exists but I’m just curious.

Lollipops23 · 23-04-2021 5:00pm

I'm STILL waiting on my rescheduled vaccination appointment. Getting really annoyed and feeling forgotten about.

Crunchy Friends · 23-04-2021 5:25pm

Lollipops23 wrote: »

I'm STILL waiting on my rescheduled vaccination appointment. Getting really annoyed and feeling forgotten about.

You must be so frustrated! Was your original vaccine postponed due to the changes with the AZ vaccine? Do you mind me asking was yours arranged via your GP or hospital consultant?

MyAccount · 23-04-2021 6:02pm

I was advised by my Neuro (video call) today I’m in Cohort 7. Neuro, who I see privately, told me he / the hospital he’s based in are not involved in vaccination, and to follow up with either my GP, or the HSE.

When saw my GP (about 2 weeks ago), she also said Cohort 7. Her view at that stage was that I’d probably get vaccinated in her practice and to keep an on the Practice website, which in fairness seems to be regularly updated. The most recent update yesterday states the Cohorts 4 & 7 should be vaccinated within 4 weeks. That is the first time their website has posted anything resembling a timeline, so I am hopeful. Fingers crossed.

MS in all its glory

Comments