MS in all its glory

sqooka

Hmmm.....thanks, I should probably get on that so.....

pbarr

I told my insurance co back in February when I renewed. I didn't need any letter just told them over the phone. They said it was fine with them as long as the Licencing authority granted me a licence.

byhookorbycrook

Pbarr, I was told the same, but past experience with another insurance company makes me prefer to submit it in writing.

pbarr

Its probably better to be safe than sorry. I might do that myself.

ElleEm

Has anyone had to go for a medical assessment to continue to recieve illness benefit?
What was it like?

byhookorbycrook

Am still working, so of no use to you, sorry.

chumpster

Hi ElleEm,
I went for a medical assessment last year re Illness Benefit and the doctor could not have been nicer to me. Very sympathethic re MS. Gave me lots of advice as to entitlements etc. Was dreading it but it went well. Hope you have as pleasant an experience as they don't happen v often with Social Welfare departments

ElleEm

chumpster wrote: »

Hi ElleEm,
I went for a medical assessment last year re Illness Benefit and the doctor could not have been nicer to me. Very sympathethic re MS. Gave me lots of advice as to entitlements etc. Was dreading it but it went well. Hope you have as pleasant an experience as they don't happen v often with Social Welfare departments

Thanks for that. I went to my own GP surgery yesterday as he had to fill in a form in preparation for the assessment. He put me at complete ease and was so nice to me.
I just hate the idea of going in and having to TELL someone my ailments, as they can't tell if you have neuropathic pain, L' Hermittes, etc. The GP did check my eyes though, and told me that there he could see that I was having a problem with my vision.
That felt better, as I have read people ( not MS related) having difficulty at these assessments. I just don't want to go and have to beg someone to believe that I am struggling.

ralph123

Hi all fellow MS people,

It is so nice to talk with others who have the same experiences. Between the numbness and the fatigue I love the heading of the thread "MS and all its Glory.."
I have suffered with MS for a few years now but 2011 has had to be my worse, relapse after relapse and to top it all contracted Bacterial Meningitis ( thank god for a great family support ). Bur since then my fatigue is terrible, hospital solution was to try me on fatigue tablets but to be honest that was as like eating a pack of M&M`s
What is starting to happen now is effecting my work. Only recently my job spoke to me about reducing my working week, all in the interest of a better "life/work balance". Sounds great but the loss in my take home pay would be more than my family could afford.
Has anyone had similar experience regarding employment?? Is there any assistance available through social welfare ??

From a worried MS friend

ElleEm

ralph123 wrote: »

Hi all fellow MS people,

It is so nice to talk with others who have the same experiences. Between the numbness and the fatigue I love the heading of the thread "MS and all its Glory.."
I have suffered with MS for a few years now but 2011 has had to be my worse, relapse after relapse and to top it all contracted Bacterial Meningitis ( thank god for a great family support ). Bur since then my fatigue is terrible, hospital solution was to try me on fatigue tablets but to be honest that was as like eating a pack of M&M`s
What is starting to happen now is effecting my work. Only recently my job spoke to me about reducing my working week, all in the interest of a better "life/work balance". Sounds great but the loss in my take home pay would be more than my family could afford.
Has anyone had similar experience regarding employment?? Is there any assistance available through social welfare ??

From a worried MS friend

If they drop your working week to three days or less, you may be entitled to supplementary welfare. Ring your local citizen's advice or go to your local CWO to ask about it.

MS.ing

also if you are on disability allowance you can work up to 20 hours a week I believe. again ask the CWO

val444

Hi all,

I am about to begin my first ever course of IV steroids on Monday. Mad panic coz I am getting married in three weeks! Anything I should be mindful of? Can I go back to work for the day afterwards? Do I need to bring someone with me?

Thanks!

ElleEm

val444 wrote: »

Hi all,

I am about to begin my first ever course of IV steroids on Monday. Mad panic coz I am getting married in three weeks! Anything I should be mindful of? Can I go back to work for the day afterwards? Do I need to bring someone with me?

Thanks!

The steroids are grand. the only thing i noticed was a metal type taste in my mouth for a few hours afterwards.

val444

Thanks ElleEm.

Do you know if it would be okay to go back to work afterwards? Do they leave the IV in your arm for the three days?

Mushaboom

val444 wrote: »

Thanks ElleEm.

Do you know if it would be okay to go back to work afterwards? Do they leave the IV in your arm for the three days?

Hi Val,

If you're a day patient, they don't leave the canula in, as far as I know anyway. It's inserted each day that you go in by a registrar and they are doing that all the time so you're in good hands.

Hope it kicks in and you feel better quickly x
Oh and I recommend bringing in some werthers original to combat the metallic taste.

val444

Thanks Mushaboom.

I have no worries about the needle, sure I stab myself daily with Copaxone! I am more worried about freaking people out at work, if I have a wire sticking out of my arm. Everywhere I have searched online suggests that they will leave it in. Erra, I can always ask them to take it out I guess.

My other worry is that I will pull it out myself. I am shocking for pulling out drips etc., in my sleep. It is now written on my chart every time I am in hospital! They have even learned to put it in my foot, so that I won't be able to pull it out as easily. Ridiculous I know, but I can't help it!

Mushaboom

Well my experiences have been that they won't leave it in if you're leaving the hospital, so I had to have mine reinserted everyday for the 5 days each time. Also, max amount of time the drip should be in is like 2 hours I'd say so just try to stay awake, maybe catch up with us on boards!

val444

Hi,

Just to update ye, just now finished my second infusion. They did leave the cannula in, but it is taped up neatly and I can hide it under a long top. Only issue with that is that I am roasting!!!

So far the side effects I have experienced are a horrid taste in my mouth, not metallic, more like I drank a huge blob of hand sanitiser! Also, massively overheating. I feel like I am going through the change. And finally, a rapid heartbeat, and crazy anxiety. Like panic over absolutely nothing, it is ridiculous. I didn't even close my eyes once last night, yet with absolutely no sleep, I feel full of pep!

Very strange.

coughdrops

The only time I had to get steroid IV was when I was first diagnosed and the weather was similar to what we've had recently. So I was in Vincents overnight, overheating like mad. I remember the taste too, and think it was more like the hand sanitiser you describe than metallic.

Do you have to take oral steroids when you're finished? I had them for 2 weeks and they left me a bit dopy (dopier than usual!!)

I hope the rest of the treatment goes ok for you

byhookorbycrook

I always had mine as an in-patient-even though I was out at large around the town for a good portion of the day!

val444

Nope, no oral taper. i actually feel a million times more human today than i did yesterday, which is weird, as i was warned i would be worse! i am a bit worried about completely crashing on Thursday/Friday as my hen is this weekend! And i still don't feel even the smallest bit sleepy...

coughdrops

Have my annual apt in SVUH on Wednesday, and I was just thinking about what I have to say to the neuro... which is pretty much nothing!

Does anyone really prepare well for these apts? I end up trying to remember any symptoms I've had, but should I do more? Do you guys all keep diaries/notes?

I just wonder if I should be doing more / asking more when I am there

Mushaboom

Hi Coughdrops,

It's good to hear you're doing well. I will be writing a list of issues for the next neuro app, I always feel the need to do that with the visits being so far apart and at the moment I'm fed up of the DMD I'm on's side effects and am going to beg them to take me off it!

Maybe discuss it with family or a friend. They may remind you of something you wanted to mention to the doc.

Best of luck!

coughdrops

Mushaboom wrote: »

I'm fed up of the DMD I'm on's side effects and am going to beg them to take me off it!

Sorry to hear that. Touch wood mine seem to be working ok for now, with no unmanageable side effects, but when I used to be on Rebif it was a different story!! I hope they change it for you.

You're right about asking the hubby, he can probably remember me moaning about something

byhookorbycrook

Mushaboom, I urge you to reconsider, can you try another DMD?

Coughdrops, I used to keep a little note book and write any thing that came into my mind down. Nothing worse than remembering things in the car on the way home!

outnumbered82

I would write things down and will do it from now on. I had my app at the start of the month and was very disapointed with it, i saw a doc who hadnt read my chart. She was a nice lady but knew nothing about me which left me feeling very upset and wondering what the point of it was. She started off the meeting with saying all my test were clear which if true would mean i didnt have ms!!!! It made me wonder if anyone else made mistakes when looking at results. She through me so much i forgot everything i was going to ask and left no better off then going in.

byhookorbycrook

I'd be kicking up, Outnumbered.

outnumbered82

I have to ring them next week, so im going to have a word with them as it really upset me the whole thing.

Mushaboom

Hi Coughdrop, I'm actually on rebif, love the rebismart device but hate the side effects. Just hoping they're not all the same.

byhookorbycrook, I'll see what they say to me at my next app... I was wondering about Gilenya but not sure if that's even possible to get hold of in Ireland at the moment.


outnumbered82, sorry to hear that your app didn't go well, it's awful when you leave and then think why didn't I say this or that!


RANT ALERT!

I'm annoyed at the system at the moment, not the people really. I mean I was informed of my dxd in Oct by my MS nurse because the neuro couldn't open my MRI DVD during my app in August, so I still haven't spoken to a neurologist since my diagnosis. Oh if I was a millionare.....

byhookorbycrook

Gilenya has been made available to a small no. of people with MS in Ireland, so worth chasing that down.