MS in all its glory

byhookorbycrook · 20-05-2021 11:33am

Lollipops23 wrote: »

Anyone else on Tysabri? I had my 4th infusion today and feel totally shattered after it. Hasn't happened before, wondering if it's related to the vaccine....

For the 1st 6 months of Tysabri, I was wiped out the day after . I also used to managing the day before, of and after as "easy days." When did you have your vaccine?

Lollipops23 · 20-05-2021 11:41am

Friday 7th, so long enough ago! I was wiped out after my infusion this week, but fine the next day!

cj maxx · 22-05-2021 8:36pm

Anyone else find that weather affects their walking ? With this changeable weather my walking is all over the place

byhookorbycrook · 23-05-2021 5:12pm

cj maxx wrote: »

Anyone else find that weather affects their walking ? With this changeable weather my walking is all over the place

Extremes usually hit us hard, but I find that "close" warm weather absolutely exhausts me.

Nigel Fairservice · 23-05-2021 5:59pm

byhookorbycrook wrote: »

Extremes usually hit us hard, but I find that "close" warm weather absolutely exhausts me.

I'm the same. Muggy weather wipes me out, I couldn't even face walking to the local shop. I find the colder it is the better able I am to function.

cj maxx · 23-05-2021 11:45pm

byhookorbycrook wrote: »

Extremes usually hit us hard, but I find that "close" warm weather absolutely exhausts me.

I dread late July/ August when the humidity kicks in, but we're a long way off that. I've noticed that changeable weather does me in. A few nice days , then cold and wet. My leg doesn't know what to do! Add in I ran out of baclofen

byhookorbycrook · 25-05-2021 1:17pm

cj maxx wrote: »

I dread late July/ August when the humidity kicks in, but we're a long way off that. I've noticed that changeable weather does me in. A few nice days , then cold and wet. My leg doesn't know what to do! Add in I ran out of baclofen

Feic that! I couldn't manage without it .:(

Nigel Fairservice · 25-05-2021 3:42pm

I had my neurologist appointment today. Was asked was I vaccinated and said I wasn't. They then asked me why I wasn't

They said I should have been done weeks ago and that they'd put me on their list.

byhookorbycrook · 26-05-2021 10:14am

A few fell between two stools, gps were told consultants would put people forward, consultants thought GPs were doing it. On the plus side, you are less likely to get AZ and more likely one of the far more effective ones.

MyAccount · 26-05-2021 12:52pm

byhookorbycrook wrote: »

A few fell between two stools, gps were told consultants would put people forward, consultants thought GPs were doing it. On the plus side, you are less likely to get AZ and more likely one of the far more effective ones.

Agreed - I had a similar experience - Neuro said it's the GP's job, and GP said it was the HSE's job - HSE said it was the Neuro's job, so went around in circles for a while, as everyone consistently adopted a "not my job stance" - after a becoming a bit of pest the GP agreed to do it - got my first shot 3 weeks ago, and my second dose is due this day next week - unfortunately I don't think we can assume anythin,g so just keep asking until you get when you (rightly) need

Nigel Fairservice · 26-05-2021 7:29pm

byhookorbycrook wrote: »

A few fell between two stools, gps were told consultants would put people forward, consultants thought GPs were doing it. On the plus side, you are less likely to get AZ and more likely one of the far more effective ones.

I looked at the priority list when it first came out and it prioritised MS patients on certain medications. My medication wasn't listed so didn't think I could get vaccinated before my age cohort. The HSE line for priority seemed to be don't call us, we'll call you. I didn't do anything further about it either, just took it that I'd have to wait until they reached 35-39 age group. The neurologist was a bit surprised I wasn't vaccinated already. At least now I'll hopefully get Pfizer or Moderna.

byhookorbycrook · 26-05-2021 7:59pm

Nigel Fairservice wrote: »

I looked at the priority list when it first came out and it prioritised MS patients on certain medications. My medication wasn't listed so didn't think I could get vaccinated before my age cohort. The HSE line for priority seemed to be don't call us, we'll call you. I didn't do anything further about it either, just took it that I'd have to wait until they reached 35-39 age group. The neurologist was a but surprised I wasn't vaccinated already. At least now I'll hopefully get Pfizer or Moderna.

That changed again and many GPS are now doing any patients with chronic conditions by now . You shouldn’t have to wait for your age cohort.

Lollipops23 · 27-05-2021 11:18am

Nigel Fairservice wrote: »

I looked at the priority list when it first came out and it prioritised MS patients on certain medications. My medication wasn't listed so didn't think I could get vaccinated before my age cohort. The HSE line for priority seemed to be don't call us, we'll call you. I didn't do anything further about it either, just took it that I'd have to wait until they reached 35-39 age group. The neurologist was a bit surprised I wasn't vaccinated already. At least now I'll hopefully get Pfizer or Moderna.

My meds weren't listed either but I still got done well before my age cohort.

Ring your GP, that's how I got it!

whatever76 · 27-05-2021 11:37am

byhookorbycrook wrote: »

That changed again and many GPS are now doing any patients with chronic conditions by now . You shouldn’t have to wait for your age cohort.

Im 44 and on Gilyenia and got Moderna 2/3 weeks back got a text saying I was referred to by hospital as high risk and to confirm if I wished to get vaccine etc. So maybe try MS nurse as well ?

Nigel Fairservice · 27-05-2021 1:55pm

I called our GP this morning about my sister who is also cohort 7. She has an intellectual disability and wouldn't be able to organise a vaccine for herself. I didn't mention my own vaccine because I thought the hospital were going to take care if it. GP rang me back and and booked the two of us in. Very surprised.

SouthWesterly · 01-06-2021 5:54pm

MyAccount wrote: »

I also take Vitamin D and a B12 supplement. I have regular blood tests, as Anemia seems to be always lurking in in the background, as well as to monitor potential nasty side effects from my MS medication (Plegridy). Just in case that frightens anyone, I’ve not had any significant side effects, and think that such monitoring is precautionary as the doctors like to watch it just in case.

If anything the regular testing is good overall as it helps catch other stuff early; in my case a mildly under active Thyroid was spotted and regulating that was very beneficial, as once that was sorted my fatigue / energy levels improved noticeably.

Theres a lot of work being done showing Ms is an auto immune disease and benefits from high doses of vit D and a few other vitamins.
There's a guy in South Dublin I know with Ms but has been symptom free for years. Does a lot of work with other sufferers. He's also found the flushing out of heavy metals has a benefit.

MyAccount · 04-06-2021 1:39am

Got my second dose if Pfizer today. Feeling a bit rough but that's not uncommon and small price to pay. Looking forward to getting back to meeting a few pals responsibley in the next short while.

Lollipops23 · 04-06-2021 8:45am

Second dose of Pfizer due this evening- it'll be full steam ahead for our wedding in August after that!!

byhookorbycrook · 04-06-2021 1:32pm

Lollipops23 wrote: »

Second dose of Pfizer due this evening- it'll be full steam ahead for our wedding in August after that!!

Congratulations!

cj maxx · 05-06-2021 11:49am

2nd dose of AZ about an hour ago. I have my paracetamol and naxopen set out , with water , and made my bed so its cosy when I get in. Which will probably be in 3-2-1 zzzz

whatever76 · 07-06-2021 10:53am

getting 2nd Moderna dose this week - Had no issues on first one but hearing few people with bad side effects on 2nd one - anyone here have issues after 2nd one ? Am on Gilynea .

discobeaker · 07-06-2021 12:08pm

whatever76 wrote: »

getting 2nd Moderna dose this week - Had no issues on first one but hearing few people with bad side effects on 2nd one - anyone here have issues after 2nd one ? Am on Gilynea .

Hey whatever,I got my second shot of moderna about 3 weeks or so ago. I felt awful after it. Cold sweats, temperature of 38.5,aches and pains etc. This kicked in about 12 hours after the shot for me. Thankfully it all died down within 24 hours but it wasn't a fun ride. Hopefully you won't get any side effects

whatever76 · 07-06-2021 1:08pm

discobeaker wrote: »

Hey whatever,I got my second shot of moderna about 3 weeks or so ago. I felt awful after it. Cold sweats, temperature of 38.5,aches and pains etc. This kicked in about 12 hours after the shot for me. Thankfully it all died down within 24 hours but it wasn't a fun ride. Hopefully you won't get any side effects

thanks Discobreaker - good to have the heads up on what to expect and it over within the 24 hours ! Will keep you posted !!

Lollipops23 · 08-06-2021 9:17am

I had my 2nd Pfizer jab on Fri- was actually fine until Sat night when I got a temp and aches/pains. Got an early night and woke up fine on Sunday!

Dante · 08-06-2021 11:39pm

Hi folks, just trying to figure out what to do regarding my partner's drivers license after diagnosis.

She has already informed her insurer but is unsure about what needs to be done on the NDLS side. Obviously she needs to inform them of the diagnosis, however her current license is not up for renewal for 5+ years.

What is the usual process for informing them and what should she expect after doing so? She found an NDLS form online but it seems to be only for renewing your license.

Thanks!

whatever76 · 09-06-2021 12:29am

Dante wrote: »

Hi folks, just trying to figure out what to do regarding my partner's drivers license after diagnosis.

She has already informed her insurer but is unsure about what needs to be done on the NDLS side. Obviously she needs to inform them of the diagnosis, however her current license is not up for renewal for 5+ years.

What is the usual process for informing them and what should she expect after doing so? She found an NDLS form online but it seems to be only for renewing your license.

Thanks!

If you go to page 168 there are details on this as I asked v same question few months back - you will need to update Drivers license as they add a code ( 101 ) , but first you will need get a form filled by your GP and also pending on insurances co they MAY look for a GP declaration as well so try and get both at same time if needed ! No impact to Premium once GP signs off and states you are medically fit to drive.

Form is here - https://www.ndls.ie/images/Documents/DrivingLicence/D401_Full_Licence_app_form.pdf
Medical form - https://www.ndls.ie/images/Documents/Forms/168486_NDLS_Medical_Form_AUG%202020_WEB_HR.pdf

more details here - your best do it in person at minute rather than online if you don't have GOV ID as at time in March the service for getting these was not in service

https://www.ndls.ie/licensed-driver/update-my-personal-details.html#to-apply-in-person-at-an-ndls-centre-for-a-change-of-medical-details

Dante · 09-06-2021 8:11am

whatever76 wrote: »

If you go to page 168 there are details on this as I asked v same question few months back - you will need to update Drivers license as they add a code ( 101 ) , but first you will need get a form filled by your GP and also pending on insurances co they MAY look for a GP declaration as well so try and get both at same time if needed ! No impact to Premium once GP signs off and states you are medically fit to drive.

Form is here - https://www.ndls.ie/images/Documents/DrivingLicence/D401_Full_Licence_app_form.pdf
Medical form - https://www.ndls.ie/images/Documents/Forms/168486_NDLS_Medical_Form_AUG%202020_WEB_HR.pdf

more details here - your best do it in person at minute rather than online if you don't have GOV ID as at time in March the service for getting these was not in service

https://www.ndls.ie/licensed-driver/update-my-personal-details.html#to-apply-in-person-at-an-ndls-centre-for-a-change-of-medical-details

Thank you!

Lollipops23 · 09-06-2021 8:28am

Dante wrote: »

Hi folks, just trying to figure out what to do regarding my partner's drivers license after diagnosis.

She has already informed her insurer but is unsure about what needs to be done on the NDLS side. Obviously she needs to inform them of the diagnosis, however her current license is not up for renewal for 5+ years.

What is the usual process for informing them and what should she expect after doing so? She found an NDLS form online but it seems to be only for renewing your license.

Thanks!

My insurer made me get my licence re issued with a note on it saying I had a medical issue. Wasn't a massive deal, I had to get a letter from my Dr saying I was fit to drive etc.

Only pain was having to apply in person!

ladyella · 11-06-2021 9:47pm

Hi All, mind if I jump in?
I'm being seen in the ms clinic in St Vincent's now after getting optic neuritis in January. Sudden, severe vision loss in one eye meant 3 days iv steroids followed by 3 months steroids at home. A first mri showed just 1 lesion and the consultant in Vincent's called my diagnosis a CIS. Then a lumbar showed oligoclonal bands and I've to have another mri next month followed by a consultant appt in August. I feel like I'm in complete limbo because no one will tell me what happened or what's wrong with me.
My eyesight hasn't returned to normal and gets worse with exercise but calms down once I cool down. In the last 2 weeks I've woken up twice with pins and needles in my arm and get hit randomly with tiredness I didn't experience with newborns.
Am I right to set myself up for an ms diagnosis? I nearly don't mind now because it would just mean I might get answers

Loveinapril · 12-06-2021 8:41am

It sounds that way, Ladyella. I know they often wait for the second exacerbation to diagnose MS. I only had three small lesions at my first MRI but had lots of other things flare up before the lumber puncture results came back so was actually put on meds two weeks after my first symptom. Have they put you in contact with the MS nurse in the hospital?

ladyella · 12-06-2021 3:33pm

Thanks loveinapril. I wonder will they class the eye worsening as little flare ups that go away once I stop exercising?
Yeah I got the email for the nurse and have been in contact by phone and email about results of the lp. She's the one who told me actually that it was a CIS diagnosis at the moment and that the doctor wasn't changing that yet. I haven't been in touch with her to tell her about the pins and needles but I don't know if I should either, I'm loathe to make a nuisance of myself more than I already have!

Nigel Fairservice · 12-06-2021 6:32pm

ladyella wrote: »

Hi All, mind if I jump in?
I'm being seen in the ms clinic in St Vincent's now after getting optic neuritis in January. Sudden, severe vision loss in one eye meant 3 days iv steroids followed by 3 months steroids at home. A first mri showed just 1 lesion and the consultant in Vincent's called my diagnosis a CIS. Then a lumbar showed oligoclonal bands and I've to have another mri next month followed by a consultant appt in August. I feel like I'm in complete limbo because no one will tell me what happened or what's wrong with me.
My eyesight hasn't returned to normal and gets worse with exercise but calms down once I cool down. In the last 2 weeks I've woken up twice with pins and needles in my arm and get hit randomly with tiredness I didn't experience with newborns.
Am I right to set myself up for an ms diagnosis? I nearly don't mind now because it would just mean I might get answers

Diagnosis of multiple sclerosis can often be protracted. I was told I probably had MS 10 minutes before I was discharged after a 2 week hospital stay. My diagnosis went on for another 18 months. I was stable over the 18 months and my lumbar puncture was normal as well. The longer things went on the more optimistic I was getting that it was a CIS. My neurologist never used the term CIS though and always said it was probable MS until she formally called it. Limbo is a good way of putting it, I definitely felt that way. Once you get a bit of clarity you can move one with things.

ladyella · 13-06-2021 11:45am

Thanks Nigel. It certainly feels drawn out but in reality it's probably not too bad considering the pandemic and all that goes with that. 3 weeks until my second mri and then the doctor in August for results.
The nurse did mention a probability of being put on anti inflammatories, not sure what that's for, maybe my eye? Time will tell anyway and I do feel a bit better having spoken here, like I'm not on my own!

cj maxx · 14-06-2021 10:15am

It was pretty drawn out for me before my neurologist called it. My GP had said MS was her guess ,MRI's showed old lesions but it wasn't until my 2nd LP (during a 'relapse) that the neuro gave me an official diagnosis. My major symptoms were periodic weakness and tremors in one side. It was 2+ years all told .

Blinder · 14-06-2021 9:11pm

ladyella wrote: »

I haven't been in touch with her to tell her about the pins and needles but I don't know if I should either, I'm loathe to make a nuisance of myself more than I already have!

I think you should tell them. Don't worry about being a nuisance. It's good to give them information.
Do you have an email address for them? That's usually how I communicate with the MS nurses and it doesn't feel then like I'm a nuisance/interrupting them.

ladyella · 14-06-2021 9:37pm

Thanks guys. What a minefield. I do have an email address for the nurse so I'll contact her just to fill in the gaps as I will surely forget something when it comes to appt time.

cj maxx · 15-06-2021 11:39pm

ladyella wrote: »

Thanks guys. What a minefield. I do have an email address for the nurse so I'll contact her just to fill in the gaps as I will surely forget something when it comes to appt time.

Every MS related site I've been on say keep a diary of symptoms , triggers etc just for that very reason. It a good thing to jot things down in a notebook and at appointments you can just read through it.

Lollipops23 · 16-06-2021 9:13am

cj maxx wrote: »

Every MS related site I've been on say keep a diary of symptoms , triggers etc just for that very reason. It a good thing to jot things down in a notebook and at appointments you can just read through it.

Or you could be like me where there's no rhyme or reason to your symptoms flaring!

cj maxx · 17-06-2021 7:10pm

8 visits to the house by police since September 2018 , 8 breathalyser tests ( all 0%) and was just pulled over by police ! It seems (according to the officer) someone tried to stop me from driving, and when I didn't see them called 999.
I don't give a sh1t, I'm not going to use my walking stick till its necessary as I've found you start to rely on it. I'm trying to put that day off for as long as I can !

Lollipops23 · 18-06-2021 9:14am

cj maxx wrote: »

8 visits to the house by police since September 2018 , 8 breathalyser tests ( all 0%) and was just pulled over by police ! It seems (according to the officer) someone tried to stop me from driving, and when I didn't see them called 999.
I don't give a sh1t, I'm not going to use my walking stick till its necessary as I've found you start to rely on it. I'm trying to put that day off for as long as I can !

Is it possible your MS could be starting to affect your driving?

I'm all for not going down without a fight, but when it comes to getting behind the wheel there's no room for stubbornness (where I find it otherwise serves me well!). There's too much at risk on the road.

fungie · 18-06-2021 9:19am

ladyella wrote: »

Hi All, mind if I jump in?
I'm being seen in the ms clinic in St Vincent's now after getting optic neuritis in January. Sudden, severe vision loss in one eye meant 3 days iv steroids followed by 3 months steroids at home. A first mri showed just 1 lesion and the consultant in Vincent's called my diagnosis a CIS. Then a lumbar showed oligoclonal bands and I've to have another mri next month followed by a consultant appt in August. I feel like I'm in complete limbo because no one will tell me what happened or what's wrong with me.
My eyesight hasn't returned to normal and gets worse with exercise but calms down once I cool down. In the last 2 weeks I've woken up twice with pins and needles in my arm and get hit randomly with tiredness I didn't experience with newborns.
Am I right to set myself up for an ms diagnosis? I nearly don't mind now because it would just mean I might get answers

General CIS will lead to a MS diagnosis but not always. I had mild symptoms, small lesion was found and pos lumbar puncture but wasn't enough for a diagnosis at the time. Luckily my symptoms went away after a few days with no treatment and none since. This was 8 years ago and neurologist says I'm becoming an outlier in terms of length with cis. Unless I start getting lots of lesions on MRI or symptoms appear, I'll stay as CIS. Even if minor changes on MRI appear but no symptoms it probably won't change.

My point is that no point getting hung up on formal diagnosis until it happens because it might not or could be a long time.

cj maxx · 18-06-2021 9:40am

Lollipops23 wrote: »

Is it possible your MS could be starting to affect your driving?

I'm all for not going down without a fight, but when it comes to getting behind the wheel there's no room for stubbornness (where I find it otherwise serves me well!). There's too much at risk on the road.

No. But now you mention it i was fiddling with the air-con in the car. Maybe i weaved doing that.( slowly in traffic)I hadn't thought of it

Lollipops23 · 18-06-2021 10:22am

cj maxx wrote: »

No. But now you mention it i was fiddling with the air-con in the car. Maybe i weaved doing that.( slowly in traffic)I hadn't thought of it

Lol I will freely admit to be a CRAP driver (loooong before MS was ever in the picture), so I can see myself doing that!!

Have you any idea who's being try to shop you to the gardai? Could you have a chat with them and let them know that you see a neurologist frequently? They make me do a range of coordination and balance tests every year to make sure I haven't decompensated since my last visit, and I assume that would include my driving abilities.

cj maxx · 18-06-2021 2:50pm

Lollipops23 wrote: »

Lol I will freely admit to be a CRAP driver (loooong before MS was ever in the picture), so I can see myself doing that!!

Have you any idea who's being try to shop you to the gardai? Could you have a chat with them and let them know that you see a neurologist frequently? They make me do a range of coordination and balance tests every year to make sure I haven't decompensated since my last visit, and I assume that would include my driving abilities.

The 1st time was from a off licence. Liverpool were playing the 1st cl game after the Karius final , so I made a night of it ,an Indian and 4 beers. Fair enough coming from an off-licence .
The 3rd time was a delivery driver who parked his lorry in front of the local shop meaning I had to go to the off licence for smokes, again fair enough.
The rest of the time I've no idea who rang them. Neighbours i suspect.

Lollipops23 · 18-06-2021 2:58pm

cj maxx wrote: »

The 1st time was from a off licence. Liverpool were playing the 1st cl game after the Karius final , so I made a night of it ,an Indian and 4 beers. Fair enough coming from an off-licence .
The 3rd time was a delivery driver who parked his lorry in front of the local shop meaning I had to go to the off licence for smokes, again fair enough.
The rest of the time I've no idea who rang them. Neighbours i suspect.

Do you walk with a pronounced limp?

cj maxx · 18-06-2021 3:33pm

Lollipops23 wrote: »

Do you walk with a pronounced limp?

Yeah. Bouncers on pub doors , supermarket security ( even checkout staff) and gardai have mistaken me for drunk walking.
Its trivially annoying when there's no smell of drink and I can speak intelligently (somewhat

), but more so if I was out for a few and I smell of alcohol . I was given these cards by the MS soc for that very reason and if I need the toilet etc, but bouncers don't give a damn.

GTE · 24-07-2021 5:59pm

Hi all, I can't seem to find the search forum feature on the new Boards. I was wondering if anyone had any stories about obtaining mortgage protection insurance while having MS. It's a worry for us as my partner has MS, but very very mild. Diagnosed 5 years ago and no relapse or symptoms since, other than some tiredness.

We know of the specialist mortgage protection providers but it will be a long weekend until we find out from them as we are worried this will screw up our mortgage.

adam88 · 26-07-2021 1:18pm

https://www.boards.ie/discussion/comment/117656569#Comment_117656569

Hi, it’s a bit difficult getting it but it can be got from the specialist providers. Worse case scenario most banks will allow the mortgage be drawn down once tou get two refusals. It’s just a danger if something should happen the other side isn’t protected financially

bookworms · 26-07-2021 2:31pm

Just another question on mortgage insurance. My husband and I have a mortgage, and the life insurance with the last 10 years. I have been diagnosed recently. Should I notify the insurers?

adam88 · 27-07-2021 8:12pm

https://www.boards.ie/discussion/comment/117663410#Comment_117663410

Doesn’t matter. That’s the risk they took when giving ye the policy. You’ll need to advise car insurance company tho

MS in all its glory

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