MS in all its glory

sqooka · 22-04-2012 11:02pm

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

pbarr · 22-04-2012 11:25pm

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 · 23-04-2012 5:47pm

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

pbarr · 23-04-2012 8:42pm

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

ElleEm · 25-04-2012 4:45pm

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

byhookorbycrook · 25-04-2012 10:46pm

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

chumpster · 26-04-2012 6:21pm

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 · 27-04-2012 11:37am

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 · 29-04-2012 12:57pm

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 · 29-04-2012 2:46pm

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 · 30-04-2012 1:02am

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

val444 · 26-05-2012 1:36pm

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 · 26-05-2012 5:28pm

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 · 27-05-2012 12:43pm

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 · 27-05-2012 1:47pm

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 · 27-05-2012 4:15pm

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 · 27-05-2012 5:15pm

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 · 29-05-2012 4:47pm

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 · 29-05-2012 5:16pm

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 · 29-05-2012 7:22pm

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 · 29-05-2012 10:31pm

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 · 01-06-2012 3:41pm

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 · 01-06-2012 4:14pm

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 · 01-06-2012 4:28pm

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 · 01-06-2012 6:47pm

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 · 01-06-2012 7:00pm

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 · 01-06-2012 8:37pm

I'd be kicking up, Outnumbered.

outnumbered82 · 01-06-2012 10:31pm

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 · 02-06-2012 12:42pm

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 · 02-06-2012 2:03pm

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

coughdrops · 06-06-2012 4:13pm

Had my appointment today, and was in and out pretty quick. I realise some people don't like short appointments, but I do (unless I have a problem / query which I didn't today thankfully!)

They did a test on my hands, right vs left, putting pegs in the board. Haven't had that done before. Just highlighted to me how my right hand has lost dexterity- fumbled a bit witht the pegs. Was better with my left hand, although I am right handed. The MS doesn't really affect the left, typical!

Anyway that's the update post-SVUH!

CD

coughdrops · 18-06-2012 10:02am

How is everyone this morning? Had a long busy week at work last week, and I am still very tired from it.

Do any of you take vitamin / tonic supplements to help with energy levels?

byhookorbycrook · 18-06-2012 6:27pm

I take omega oils, vit b, d, c and from time to time something like Vivioptal.Fatigue in MS is like no other kind, it really gets into your bones.I try to store up sleep, if I know I have an especially busy time ahead.

outnumbered82 · 18-06-2012 8:38pm

I take amantadine for fatigue. I did try all the vitamin supplements but they didnt work

bnt · 19-06-2012 1:18am

A story all over the entertainment news today, e.g. People magazine, suggests that we may have a new celebrity MS spokesperson: Jack Osbourne, son of Ozzy and Sharon, star of The Osbournes. The publicity is useful, I suppose.

coughdrops · 25-06-2012 8:57am

After a weekend of feeling bad, this morning I feel awful. Fatigue has hit me like a bus. I could cry with tiredness, and would love another day in bed - slept away most of yesterday- but don't think the boss would be too happy

outnumbered82 · 25-06-2012 9:42pm

Coughdrops you poor thing i hate the fatigue i didnt think i was tired this weekend but ended up in bed all day yesterday it really hit me after a busy weekend when everything settled down how tired i was. This morning i was up early but had recharged enough to get through the day, i even sat out in the sun for a while in the afternoon getting some well earned vitamin d!!

Fighting Irish · 26-06-2012 2:41am

http://www.facebook.com/notes/ccsvi-in-multiple-sclerosis/multiple-sclerosis-hypoperfusionreperfusion-theory/10150960894457211

Interesting read
Has anyone here had CCSVI treatment? Where and at what cost?

byhookorbycrook · 26-06-2012 3:53pm

It has been largely discredited, I'd stay well clear. I'd prefer something like Campath.

Denise75 · 29-06-2012 4:56pm

Hi I'm new to this site as it was recomended by a friend. I'm in my early 30's and faced with the probability of having MS. I wonder if anyone could give me some advice as the unknown waiting is the worst feeling at the moment. About 2 yrs ago i lost sensation on the left side of my face and was sent for an MRI scan on the brain. I never recovered the sensation, all feels cold especially my mouth area and pain around eye and head area sometimes. About 4 to 5 weeks ago I developed swelling in both legs with pain down right arm and was sent to casualty by GP. I couldn't pass water for hours but doctors said couldn't find anything wrong and sent me home. 4 days later I was back to casualty with a severe pain down left arm and hand swollen. I explained to doctors the pain was like electricity going down my arm. My legs had a stiff or tight feeling that wouldn't go away, my right leg being worse than left. My GP said come back in a week or two if swelling didn't disappear. It reduced but other symptoms didn't disappear. I forgot to say I had numbness in smaller fingers but feeling returned.
I have an appointment to see a Neurologist in Dublin next month and the appointment can't come fast enough as I feel the symptoms are getting worse, maybe I'm worring too much but It's hard not to. I now have the pins and needles sensation in back of hands and yesterday got a severe burning sensation down the left arm. My legs I imagine are getting stiffer by the day.
I know It hasn't been verified that it is MS but a student doctor said it's either nerve damage or ms straight to my face, my GP was outraged by this but said I do have a lot of the symptoms similar to MS and so did a person I asked when I enquired with the MS society of Ireland. I'm pretty prepared for the obvious but can't stop crumbling and breaking down every so often especially at work.
Can anyone give me some words of advice in how to tackle this. From what I read everyone's condition different. One thing going for me is the previous MRI scan didn't show anything but a lot has changed since then!!

val444 · 03-07-2012 5:10pm

Hi Denise75.

We can't give medical advice, and I am not even going to try and tell you what might be wrong. I could try and reassure you, but I don't think anything is going to calm you down at the moment. All I can say is that if it is MS, you are doing the right thing by pursuing it with a neurologist.

It is difficult, especially with symptoms like you are experiencing, but the best thing you could do right now is put any worries about MS or anything else, out of your head, and just concentrate on looking after yourself.

Another suggestion I found helpful is to write down any weird symptoms you have ever had, make an exhaustive list to show the neurologist, and then forget about it until your appointment.

Easier said than done, I know.

ANXIOUS · 05-07-2012 7:56pm

Is swelling in the limbs a sign of ms for people here?

outnumbered82 · 06-07-2012 1:02am

There are many symptons to ms. If you are worried about any symptons you might have you should go to your doctor

ANXIOUS · 06-07-2012 4:45pm

outnumbered82 wrote: »

There are many symptons to ms. If you are worried about any symptons you might have you should go to your doctor

Oh sorry no I don't think I have it, I'm just wondering if people that have been diagnosed have noticed there limbs would swell.

outnumbered82 · 06-07-2012 10:52pm

No I have never noticed my limbs swelling, just joint pain from time to time

ANXIOUS · 06-07-2012 11:49pm

outnumbered82 wrote: »

No I have never noticed my limbs swelling, just joint pain from time to time

Thanks for that. Do you mind if I ask roughly how old you are and where when diagnosed.

outnumbered82 · 08-07-2012 8:07pm

I was 28 when i was diagnosed

ANXIOUS · 09-07-2012 1:27pm

outnumbered82 wrote: »

I was 28 when i was diagnosed

Thanks for that, the situation I'm in is that my partner was diagnosed with ms but they only found it by chance they were looking for something else. She doesn't have any real symptoms at tge moment.

val444 · 09-07-2012 3:56pm

Hi Anxious,

I am 26 and I was diagnosed last year. It is good that you are taking an interest, it will be really helpful to your partner. I have never noticed limb swelling that couldn't be explained by a site reaction to the injections.

I do get joint pain, like Outnumbered. However, I have actually had a doctor tell me that I am wrong, because MS does not cause pain. Dope.

It is funny, because I never thought there was anything wrong with me, until suddenly there was. Looking back on it though, I have had mild MS symptoms for as long as I can remember. It is crazy how many small things you can ignore.

Best of luck with everything. Be sure to ask as many questions as you need to.

col.in.Cr · 09-07-2012 4:04pm

I had a friend who had MS,he left Ireland using a wheelchair to go live in Asia,he never needed it again after that,he says it was down to the good weather good food and just the lifestyle in general,he also used different herb remedies from over there.

MS in all its glory

Comments