MS in all its glory

Nigel Fairservice

Crunchy Friends wrote: »

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.

I'm on Tecfidera as well. I haven't heard anything about vaccination. I don't expect to either for a while.

Carrie6OD

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 attend vincents and was offered vaccine 2 weeks ago. I am on ocrelizumab

Salmotrutta

cplwhisper wrote: »

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

Galway. I'm on Gilenya so didn't think I would be called for a while yet. Seems a bit random and I think a lot of people are falling between the cracks, whether it's IT issues, lack of co-ordination between GP s and hospitals etc. Have a friend with another illness who only checked the cohort criteria when I told him I had got the jab, turns out he is cohort 4 but his GP had no idea. Once he told them he was given an appointment.

Crunchy Friends

Carrie6OD wrote: »

I attend vincents and was offered vaccine 2 weeks ago. I am on ocrelizumab

I have an appointment with my neurologist in Vincent’s in 11 days time so I guess I can just ask someone at the hospital then what the story is!

MyAccount

Got an e-mail this morning from my GP - as below :

"we have to wait for a further update from the HSE.

Unfortunately, we don't know when or if we will receive vaccines in the surgery.

we will be in touch when we have an update, but do not expect will not be vacining the Cohorts"

When I phoned them, they said "call the HSE Covid hotline" - the agent on the HSE line said there is no facility, centrally, to vaccinate the High Risk Cohorts outside the GPs and that I will have to wait to until my age (50) comes up.

I think I'll be getting a new GP when things settle, and they re-open their waiting lists - the two GPs I called this morning tell me they are not taking on new patients. so I'm stuck where I am.

Totally frustrated, especially when hear other "lucky" people with MS are getting vaccinated.

cplwhisper

MyAccount wrote: »

Got an e-mail this morning from my GP - as below :

"we have to wait for a further update from the HSE.

Unfortunately, we don't know when or if we will receive vaccines in the surgery.

we will be in touch when we have an update, but do not expect will not be vacining the Cohorts"

When I phoned them, they said "call the HSE Covid hotline" - the agent on the HSE line said there is no facility, centrally, to vaccinate the High Risk Cohorts outside the GPs and that I will have to wait to until my age (50) comes up.

I think I'll be getting a new GP when things settle, and they re-open their waiting lists - the two GPs I called this morning tell me they are not taking on new patients. so I'm stuck where I am.

Totally frustrated, especially when hear other "lucky" people with MS are getting vaccinated.

Upto Friday evening I was in same titanic boat like you..going nowhere and hearing & feeling I was left behind. My GP only got go ahead at lunchtime so don’t loose all hope. 😷

Lollipops23

MyAccount wrote: »

Totally frustrated, especially when hear other "lucky" people with MS are getting vaccinated.

I feel ya.

Called the nurse in the Mater Neurology today- she said they have no idea when they'll be getting batches of Pfizer in for us. Told me to link in with my GP to get on his radar, which I've done now.

I'm really fed up lads, I feel so forgotten about.

Salmotrutta

Lollipops23 wrote: »

I feel ya.

Called the nurse in the Mater Neurology today- she said they have no idea when they'll be getting batches of Pfizer in for us. Told me to link in with my GP to get on his radar, which I've done now.

I'm really fed up lads, I feel so forgotten about.

If I hadn't called my GP I reckon I would still be waiting for a call. I was actually calling to book my bloods appointment, and I certainly wasn't clamouring to jump the queue, I just wanted to know where I was in the queue and if they had any timescale. If they had said Cohort 7 and 6 weeks I would have taken it. But I'd say just that call put me on their radar, as you say, so I got on the standby list when they did get vaccines.

As the old saying goes, the squeaky wheel gets the oil.

Lollipops23

Salmotrutta wrote: »

As the old saying goes, the squeaky wheel gets the oil.

The biggest life lesson MS has given me is how to self-advocate unapologetically.

I do my best to be as polite as possible, but I have zero problems making a pest of myself!

MyAccount

As the old saying goes, the squeaky wheel gets the oil.[/QUOTE]

I can do “squeaky”

Watch out world, “Hell Hath No Fury .....”

Thanks all for the comments; not politically correct I know, and sorry to all the other folk in the same boat but I feel better knowing I’m not alone.

MyAccount

Good news, I think.

After much "squeaking" my GP finally admitted that they will be vaccinating a limited number of people who have no other alternative sources, and added me to their list. Fingers crossed, again

Blinder

MyAccount wrote: »

=
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.

Thank you. I hadn't thought about checking the GPs website. Just done that now and can see that they are taking registration for Cohort 7 and 4 to start vaccinating next week. Never would have check without seeing your comment.

I'm in Vincent's, on Gilenda, Assumed they would be organising it. Glad I checked here now this morning.

Lollipops23

Yesterday my coworker (an organ recipient) got called for his jab in Beaumont. My friend who has asthma got her jab in James's.

And not a dickie bird for us MSers!

Blinder

Blinder wrote: »

Thank you. I hadn't thought about checking the GPs website. Just done that now and can see that they are taking registration for Cohort 7 and 4 to start vaccinating next week. Never would have check without seeing your comment.

I'm in Vincent's, on Gilenda, Assumed they would be organising it. Glad I checked here now this morning.

And just got appointment now . Having 1st vaccine this weekend. So thanks again.

Lollipops23

I spent the morning calling every number I could lay my hands on- patient liaisons told me the Mater had procured Moderna doses as of Monday.

Finally got the medical secretary in Neurology and she said that those of us who were cancelled on a few weeks ago have been put forward for a clinic in mid May. Only problem? The doctors haven't signed off on ordering the doses for Neurology... maybe the golf clubs opening back up have something to do with it.

embee

folks,

Not said hello in ages but just wanted to say hi. I had my 1st AstraZeneca jab on March 22nd, am due my second on June 14th. Am on Ocrelizumab but, as per usual, I am not responding to MS meds and I have multiple new lesions since starting Ocrevus last May. Not sure where I go from here as I've previously had Copaxone, tecfidera, tysabri and lemtrada and they all failed. I'm heartily sick of MS now, i have new symptoms now, face twitching, head has developed a tic of sorts, jerking to the left constantly. Had an MRI on April 21st that went on for two goddamn hours..... Just wish it'd leave me alone!

Hope you are a keeping well and managing your MS better than I seem to be able to!

MyAccount

Was called a Covid jab on Thursday. TG. Been worried sick

(Pfizer the email says)

Lollipops23

I've been called to my GP for my jab this Friday, and got a letter from the hospital today inviting me for the 14th! Like buses lol!

cplwhisper

Lollipops23 wrote: »

I've been called to my GP for my jab this Friday, and got a letter from the hospital today inviting me for the 14th! Like buses lol!

Take whichever is handiest..have Panadol and water to hand.

MyAccount

Got my first dose of the Pfizer vacinne this afternoon - second dose scheduled for 3rd June - world looks a little bit sunnier this evening

Loveinapril

I have my second dose of Pfizer next week. I am so excited for life to start getting back to normal. Its been some year!

byhookorbycrook

embee wrote: »

folks,

Not said hello in ages but just wanted to say hi. I had my 1st AstraZeneca jab on March 22nd, am due my second on June 14th. Am on Ocrelizumab but, as per usual, I am not responding to MS meds and I have multiple new lesions since starting Ocrevus last May. Not sure where I go from here as I've previously had Copaxone, tecfidera, tysabri and lemtrada and they all failed. I'm heartily sick of MS now, i have new symptoms now, face twitching, head has developed a tic of sorts, jerking to the left constantly. Had an MRI on April 21st that went on for two goddamn hours..... Just wish it'd leave me alone!

Hope you are a keeping well and managing your MS better than I seem to be able to!

Ah feic, Embee, would you chance stem cell?

whatever76

got a text yesterday to say I was referred by CUH as high risk and to reply Yes if wanted to vaccine . Got text today and appt for tomorrow for Moderna ! Anyone else get this Brand - any side effects ?

discobeaker

whatever76 wrote: »

got a text yesterday to say I was referred by CUH as high risk and to reply Yes if wanted to vaccine . Got text today and appt for tomorrow for Moderna ! Anyone else get this Brand - any side effects ?

I'm going for my second moderna shot on Saturday. Only side effects I had were a numb arm and super tired for 4 or 5 days after it. I drank lots of water before and after the shot and took some paracetamol after I got the shot so maybe that helped me Abit but I'm not sure.

Lollipops23

Had my first Pfizer shot on Friday evening- apart from a WHOPPER bruise no real side effects!

I then had my first MRI since switching over to Tysabri from Gilenya on Saturday morning. Now am playing the waiting game to see if T is working its magic. Haven't felt any new or worsened symptoms, so I'm hopeful.

Can I ask(anyone), when did you know something really wasn't right? What were the first signs?

Thanks

whatever76

Deleted User wrote: »

Can I ask(anyone), when did you know something really wasn't right? What were the first signs?

Thanks

for me I experienced Numbness in my Feet and saddle area that came out of no where - I thought it was lower back as have issues and went to GP , thankfully he thought differently and referred me to A & E for MRI.. When I got diagnosed - hindsight kicked in when I looked at the symptoms and noticed I ticked a few of those boxes over the last few years like Fatigue, Heads spins and lack of concentration i , you'd put all that down to life/stress , age but it was the relapse that really triggered diagnosis - everyone is different being a Neuro related illness so chat to your GP if you feel something off/ not right.

whatever76

discobeaker wrote: »

I'm going for my second moderna shot on Saturday. Only side effects I had were a numb arm and super tired for 4 or 5 days after it. I drank lots of water before and after the shot and took some paracetamol after I got the shot so maybe that helped me Abit but I'm not sure.

thanks so much for the tips ! Best of luck Sat

discobeaker

whatever76 wrote: »

thanks so much for the tips ! Best of luck Sat

You are most welcome ☺️ best of luck with your shot. Just relax and take it easy for afew days afterwards and listen to your body. Im stubborn and decided to go for a walk 2 days after my shot,walked less than 5 mins from my house and had to turn back because I just wasn't fit to do it.

Nigel Fairservice

Deleted User wrote: »

Can I ask(anyone), when did you know something really wasn't right? What were the first signs?

Thanks

I went to bed one night and when I woke up the next morning the right hand side of my body stopped working properly. The first things I noticed was when I tried to get dressed. I didn't have the strength in my right hand to fasten the buttons on my jeans or my shirt. I was dragging my right leg when I walked, I couldn't hold a cup without my right hand shaking and feeling I was going to drop it, I couldn't hit the correct key on a keyboard with my right hand when typing but my left hand was fine. My mother thought I was after having a stroke.

Like whatever76 said looking back I noticed other things that I wouldn't have connected to MS at all at the time, mainly because I didn't know much about it. I imagine that is the case for a lot of people with MS. I was constantly urinating and had no tolerance to heat. After showering I always felt like I wanted to tear my skin off because of an intense itch that no amount of scratching would help. I couldn't/can't really cope very well in hot weather either. These things on their own never would have made me think of MS. It was only after something more serious happened to me like above that MS was mentioned. I think diagnosis at times isn't very straightforward. My diagnosis took a year and a half.