MS in all its glory

byhookorbycrook · 24-08-2012 04:32PM

€350 is obscene. I visited a dermatologist last year and it cost €150 for the first visit.I've loads of people say it was a relief to get an answer finally,I have to say I didn't think so-but maybe I was still clinging to the notion it was all down to my degenerative discs.

Worried 27 · 24-08-2012 04:39PM

Thanks for replying! It's funny I'm nervous and like you where I'm just sick of feeling sick and just want to know what's wrong so I can get on with my life. At the moment it's like I'm stuck and life seems to be moving along. It's horrible feeling like you are an annoyance to everyone by being sick all the time. I know they don't feel that way but inside I feel like a burden already. My two year old is always asking are you ok mammy and it's just because I was stuck in hospital for a week but it's amazing how these like things stay in there minds.

Anyway hopefully answers will come soon. Sorry for my little rant it's nice to vent to people who understand! ; )

coughdrops · 24-08-2012 08:58PM

byhookorbycrook wrote: »

I've loads of people say it was a relief to get an answer finally,I have to say I didn't think so-but maybe I was still clinging to the notion it was all down to my degenerative discs.

It's still sh*tty though

I think I was lucky in that I know a woman with MS who lives a relatively normal life. If I hadn't been aware of her, I'd probably have taken it a lot worse, because any other stories I'd heard had always been worst case scenario.

@Worried 27, rant away... if you're like me you'll spend a lot of time saying "I'm graaaaaaaaaand", and not want to worry people. Here I let rip a little bit more.

outnumbered82 · 25-08-2012 12:31AM

I don't know about anyone else but I only found out yesterday about how my friends feel about mee having MS I have told them all everything but there version of what's happened is a lot different then me. I thought they understood that at times I'd feel crap etc but in reality they don't get any of it. I now feel like I need to apologise or make excuses for the way I feel. Does anyone else feel like they need to explain them selves to there friends or do your friends just get what ms is.

Worried 27 · 25-08-2012 12:12PM

outnumbered82 wrote: »

I don't know about anyone else but I only found out yesterday about how my friends feel about mee having MS I have told them all everything but there version of what's happened is a lot different then me. I thought they understood that at times I'd feel crap etc but in reality they don't get any of it. I now feel like I need to apologise or make excuses for the way I feel. Does anyone else feel like they need to explain them selves to there friends or do your friends just get what ms is.

Outnumbered82,
Can't say I'm much help considering Im not sure I have ms or not. I've only told my 2 closest friends about the possibility of having it. One of my friends has a cousin with ms and she's been telling me about things I didn't even know yet so as for her im sure she gets it.
To be honest I don't feel you need to be apologising for being unwell I guess all you can do is try to explain to them again what ms means and how it affects your everyday life, like I said I can't give you much advice as I'm not where you are. Good luck

byhookorbycrook · 26-08-2012 03:50PM

outnumbered82 wrote: »

I don't know about anyone else but I only found out yesterday about how my friends feel about mee having MS I have told them all everything but there version of what's happened is a lot different then me. I thought they understood that at times I'd feel crap etc but in reality they don't get any of it. I now feel like I need to apologise or make excuses for the way I feel. Does anyone else feel like they need to explain them selves to there friends or do your friends just get what ms is.

No-one gets it,unless they have it.
I don't make excuses, if I need help, I'll ask for it,friends all very helpful but not patronizing. If I can't do something,I say it straight out.
The more you speak up, the more they'll understand,if they don't then they're not great friends.

This was written to explain lupus, but is a good starting point to help people understand our issue a bit.
http://www.butyoudontlooksick.com/articles/written-by-christine/the-spoon-theory/

Mushaboom · 27-08-2012 06:29PM

val444 wrote: »

Did you have any symptoms before having your daughter?

No symptoms before giving birth, I believe that's a common way for women to present with MS.

byhookorbycrook · 27-08-2012 08:47PM

For some reason, pregnanacy tends to "protect" women with MS, but then soon after the birth they are at a higher risk of relapse,for a while.

coughdrops · 29-08-2012 05:24PM

Hiya

Got an invitation to the Copaxone information day in Galway on Sept 22nd. Is anyone going to it, or been to one before?

sadie06 · 30-08-2012 11:58AM

Thanks for previous replies.

Could anyone pm me the names of recommended neurologists in the Leinster area? The guy I've been referred to will see me any time from early December in to the new year if my letter has been marked 'routine', or sooner if it has been marked 'urgent'.

My symptoms have worsened and I'm getting increasingly anxious about it all. Heading off to the Electric Picnic with a heavy heart. Can't back out as our son is unbelievably excited!

discobeaker · 17-09-2012 09:33PM

MRI Scan tomorrow (my birthday) oh the joys of it all.

byhookorbycrook · 17-09-2012 10:16PM

discobeaker wrote: »

MRI Scan tomorrow (my birthday) oh the joys of it all.

Wonderful present, not!!Good luck tomorrow, close your eyes before you go in and keep them closed until you get out!

discobeaker · 17-09-2012 10:21PM

byhookorbycrook wrote: »

Wonderful present, not!!Good luck tomorrow, close your eyes before you go in and keep them closed until you get out!

Oh i plan on that. Got my ear plugs ready to go and all. Thanks for that hookorbycrook

outnumbered82 · 17-09-2012 10:23PM

Hi
I've been given a chance to start gilenya. I don't know what to do. Rebif hasn't not worked but have had some side effects. Now im wondering if the tablets will have same effect

fergal.b · 17-09-2012 10:48PM

My wife has been on gilenya for a while now and is doing great with no side effects compered to Rebif except for a metallic taste in her mouth for the first two days, if your heart is up for it go for it

discobeaker best of luck it's not that bad, this is from a post I put on personal issues where a guy was worried about starting a relationship with a girl with MS I hope it will put a smile on your face.

Hi op, I met my wife 20 years ago and she has MS at first I had no idea what MS was and thought it was something like "ME yuppie flu" so she must have a good high power job . One of our early dates was to Beaumont hospital for an MRI she hated these and ask me if I would come and read to her while she was in there to take her mind off it,the doctors lay her down and told her not to move while they were doing the scan of course I saw this as a chance for a bit of fun and started reading stories adding a funny twist to get her to laugh, after awhile we were in stitches and the doctors were not impressed as her head kept moving messing up the scan after some time we calmed down enough to get it done and from that day on I knew she was the one for me "best date ever" We have two kids now and are very happy she still has MS but at least she doesn't have bad breath I don't think I could handle that
You will never find a girl/guy with nothing wrong with them, life is about adapting to make the best out of what you got and if this girl can make you happy for the rest of your life it wouldn't matter if she had two heads.
Best of luck to you both "if your not in you can't win"

discobeaker · 17-09-2012 11:23PM

Thanks Fergal. Thats a really nice story and it give me some hope at least.

outnumbered82 · 18-09-2012 12:11AM

Thanks fergal I was looking up the dreaded google about it and read a few American discussions on it. Few ppl were saying they gain a lot of weight when they started taking it. Did ur wife notice this?

fergal.b · 18-09-2012 07:17AM

outnumbered82 wrote: »

Thanks fergal I was looking up the dreaded google about it and read a few American discussions on it. Few ppl were saying they gain a lot of weight when they started taking it. Did ur wife notice this?

It's only been a few months now but no sign of any weight gain if anything she has lost a bit, sometimes you can read too much on the internet and only add to your worries it's best to find out for yourself. The Americans will blame everything on weight gain except food and lack of exercise:D Just kidding:p
On the day of the first trial we were given a good slap up meal followed by cream buns maybe thats the cause of it.:pac:

Big C · 18-09-2012 04:00PM

Hi, Is anybody else involved in promoting the MS Readathon

byhookorbycrook · 18-09-2012 05:54PM

We do it in school, it's a great project-win-win, funds for MS Ireland and kids read more.
Would you believe I won a teacher's prize from the MS Readathon the year before I was diagnosed!!
I would suggest anyone who can tries to make as many people aware of it as possible.
http://www.msreadathon.ie/readathon

byhookorbycrook · 18-09-2012 06:39PM

outnumbered82 wrote: »

Thanks fergal I was looking up the dreaded google about it and read a few American discussions on it. Few ppl were saying they gain a lot of weight when they started taking it. Did ur wife notice this?

I think the gaining weight thing is from less activity -or in my case telling myself I deserve a cream cake/choccy/tin of Pringles, because I have this rotten disease:D:D

Big C · 19-09-2012 08:26PM

A point of interest for all:
I have read a few comments re people saying to newly dx'ed "well it could be worse u cud have blah blah"

To all the well meaning people who said that, they were right.

After 20yrs living with MS I have just been told today that I have a cancer tumour in the lung. I knew the MS wouldn't kill me, but not quite as confident about this new sh**.
Anyone been down this road ??????

fergal.b · 19-09-2012 09:07PM

So sorry to hear that Big C got a hold of you,not much I can say except keep strong and hopefully you will come through it and "just" have your MS to deal with again some day. After 20 years of MS I'm sure your a good fighter so don't let this beat you "easy for me to say" I know.
Best wishes.

discobeaker · 24-09-2012 12:26AM

Me AGAIN!!!! Well i survived the MRI scan (it was HORRIBLE)

How long does it take to get results? They never really said.
Would it be quicker if i went and paid to go private and get the results,just for piece of mind and all that. Its just the wait thats really getting to me,well the wait and the pains in my back and legs.

The sooner im told whats up with me then the sooner i can get on treatment and hopefully get some quality of life back cos im pretty miserable at the moment.

I hope you all had a good weekend

Worried 27 · 24-09-2012 07:56AM

Hi discobeaker,
Glad your MRI went well I hate having them done I could not wait for them to finish when I had my first one a couple of months ago. Lucky me I've to have it done again next Monday so I'm dreading it.

When I got my first one done I was in hospital so they made me wait for them because they were running other tests. The lady that done the MRI in hospital said that she would said give the results to the doctor that afternoon so I think they get them back quite quick!

I'm now going private as waiting was just making me worse not knowing. I have an MRI next Monday and a back on Wednesday to the consultant for the results along with other tests I've had done over the last month, VERS, bloods, all the fun stuff.

Fingers crossed I get the answers I just want to know what's wrong with me. Hope you get ur answers soon to, we are pretty much at the same stage. Best of luck xx

byhookorbycrook · 24-09-2012 03:57PM

Mine took a month, privately, but it's the annual routine one so there was no great rush.

discobeaker · 24-09-2012 10:11PM

Yeah we both seem to be at the same stage Worried 27. Its a pain not knowing whats going on. I will be think of ya when your going for the MRI. It was horrible.

I called the hospital today to ask how long it would be till i got results and apparently they have been read already so i have to go to my GP tomorrow afternoon and he is going to get my results so here we go!!!!!

Worried 27 · 24-09-2012 10:19PM

discobeaker wrote: »

Yeah we both seem to be at the same stage Worried 27. Its a pain not knowing whats going on. I will be think of ya when your going for the MRI. It was horrible.

I called the hospital today to ask how long it would be till i got results and apparently they have been read already so i have to go to my GP tomorrow afternoon and he is going to get my results so here we go!!!!!

I'm glad they are getting them to you tomorrow, I wish you the best of luck I'm sure you are nervous about getting them but at least your on your way to your answers I'm looking forward to get them next wk! Hopefully you'll be on ur way to feeling better in no time! X

discobeaker · 24-09-2012 11:59PM

Thanks Worried. If you need a rant or just to get something off your chest then feel free to PM me. Its the wait that is the killer,as you well know.

sadie06 · 25-09-2012 04:01PM

Big C, I am very sorry to hear of your diagnosis, and hope you get all the support that you need going forward

.

discobeaker wrote: »

Me AGAIN!!!! Well i survived the MRI scan (it was HORRIBLE)

Well done! I too had one last week, and didn't find it too pleasant. At one stage I had that sensation of yester-year when I went to bed after too much to drink, and it felt like the bed was spinning. Not good.

For those with it ahead of them, take it in sections. Each component of the scan lasts a few minutes, then give yourself a chance to relax, unclench (ahem), drop your shoulders and take a deep breath for that couple of seconds in between.

Thank you to the person who pointed out that it was ok to move a little during those short breaks when the machine is silent....that info proved invaluable!

So, the radiologist said the results would be sent to my neurologist, and that the disk I was being given was for myself in the case of any future changes of neuro etc. Today, I had a missed call from my neuro's secretary (never got to call back) asking me to drop the disk in, as he wants to review it.

Is this standard procedure, or should I be worried?

Thank you!

MS in all its glory

Comments