MS in all its glory

byhookorbycrook

€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

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

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

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

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

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

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

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

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

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

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

byhookorbycrook

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

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

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

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

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

outnumbered82

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

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

Hi, Is anybody else involved in promoting the MS Readathon

byhookorbycrook

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

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

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

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

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

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

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

discobeaker

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

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

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

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!

byhookorbycrook

Standard procedure, of course neuro would want up-to-date info.

sadie06

Ah...thanks for that. I misunderstood so.

outnumbered82

Do they always ask to look at the disk. I had a scan in June and from the minute he handed me the scan disk I felt like no one was reading the scan. He made a comment like bring it with u for ur next check up! They don't pass scans from the private to public hospital. Never got results. When I rang they hadn't seen them yet but said they would look and if there was anything wrong ring me. Still not convinced they have read them!

byhookorbycrook

My neuro is on the same site as the MRI centre,so stuff gets shared easily.I'd ring and ask they contact you when they have looked at them

Worried 27

Hey everyone I finally got my diagnoses today and it is ms! I've been given so many leaflets on the four types of injections, avonex,copaxone,betaferon and rebif! I've read thru them all already and was just wondering if anyone had an advice or information I should take into account when deciding which way to go! It's all very overwhelming!

byhookorbycrook

Welcome to our little club!Sorry to hear it though.:(

I discussed it with my neuro before I picked one. She felt at the time that betaferon was the best for me, even though it meant injections every second night.I changed to avonex down the line and didn't think it was as good. (Changed due to site reactions)

outnumbered82

Worried sorry to hear that but at least you know what it is. I started on Rebif and will prob move to the pill form soon. That is due to bad site reactions and only being able to stomach half doses. One thing is not to believe everything the drug company leaflets they always make the drug seem like its the best one. Did you ask about the pill instead of injections?

discobeaker

I totally forgot to reply to this,been so busy the last week.

So last wednesday,i got diagnosed with MS (turns out it doesn't stand for Marks and Spenser's)

Gotta go to the hospital on the 16th to talk to my doctor and see where to go to from there. For those of you on treatment,how long after did you start to feel the side effects (if any) Im heading to London on the 23rd (after the last few weeks i deserve a holiday) and i just dont want to be away from home and then start getting the side effects.

@Worried..... Dont worry L,we will be fine. We just have to stay positive.
This is the start of our new lives

outnumbered82

It took a month for me to feel side effects.. They start you off on small amounts to build u up by then u hopefully have a tolerance for it. When I started Rebif I did 2 weeks at 8 then a week at 16 and 22 then I was at 44 when the real side effects happened

discobeaker

Is that 44 tablets a month???

Worried 27

I did ask about the tablet form but he said I have to start on an injection form first before I'd be allowed the tablets.

@ discobeaker , yeah we are gonna b fine it's just trying to decide what ones to start I'm very nervous about the whole injecting urself but I'm sure u get use to it. At least ya don't have to wait to long to see ur doc to get things moving.

outnumbered82

@ discobeaker no there the units / amount you inject the injector I got which is the rebi smart does it all for you so there is no dial up it injects the same amount all the time.

discobeaker

Aww right. I thought it was 44 tablets a month. Phew!!!!

I guess i wont know more until the 16th and i take it from there. Any suggestions of questions to ask my doctor on the 16th. I havent got a clue

Yeah Worried.... we will be fine This thread is great so thanks to all the people have helped me understand more about this feckin thing. I really appreciate it

byhookorbycrook

Questions:
What disease modifying drug does he/she suggest as best for you?

If you have pain,you'll need to get pain relief sorted(neuropathic pain doesn't respond to to ordinary painkillers)

You'll need to get sorted with a Long term illness book/card.

Letter for your insurance to say you are fit to drive(essential you tell them-if not your policy could be invalid)

discobeaker

byhookorbycrook wrote: »

Questions:
What disease modifying drug does he/she suggest as best for you?

If you have pain,you'll need to get pain relief sorted(neuropathic pain doesn't respond to to ordinary painkillers)

You'll need to get sorted with a Long term illness book/card.

Letter for your insurance to say you are fit to drive(essential you tell them-if not your policy could be invalid)

Cheers for that byhookorbycrook.

Well as for pain its just my knees and my back thats in pain so i will ask about that.

I dont drive so i dont have to worry about that.

What is a Long term illness book/card for??? Do you use it for anything?

outnumbered82

Long term illness book is issued by the health board after you register your self as having ms all your meds will be written in it. You give it to the chemist where you'll be picking your meds every month. The meds are free to ppl who have long term illnesses. To register from what I remember I got a form off health board sent it in to the hospital then they send it back and you give it to chemist. Then you get a book which you give to hospital they list your meds and you bring it to chemist. All a lot of bull if you ask me but you know the H s e they love to make it difficult.

byhookorbycrook

LTI book covered my paracetomol,which I took before betaferon to counteract side effects, it covers all my pain meds-and there are lots -anything you need for your MS really.There is also tlk to you would get free GP care if you have an LTI.

discobeaker

Thanks for the advice byhookorbycrook and outnumbered,

I will look into that LTI book on Monday.

Thanks for the advice. Its really Appreciated I hope you all are having a good weekend

ash23

Hi all. Am so glad I found this thread.
I am back next week for a brain and spinal MRI. No diagnoses and obviously am hoping it isn't MS but am petrified it will be.
I am female, 30 and fairly healthy. Back in March I developed a numbness and heavy feeling in my right leg, radiating from my back, down my entire thigh and down my inner leg.
I went for an MRI but it was a lower back one, nothing really showed up and the numbness went away so no more was done.
A couple of months ago I got a terrible kidney infection and for a few weeks after I was slightly incontinent, suffering leaks but again, it resolved itself and I thought no more of it.
And then I got ON and that was when the doctor sort of sat up and took notice. I went to the eye clinic and for a contrast MRI of my optic nerve. I was seen by a neurologist but my neuro exam was normal, I feel well, not overly tired but I am a bit forgetful.
I am now waiting on the brain and spine MRI. Thankfully the neurologist has held off doing a lumbar puncture until I have the MRI (the man is not a monster!).

I am so scared. I have been trying to be optimistic but I have a sense of foreboding that it will be MS.
I had 3 days of IV steroids which more or less cleared up the ON. I'm back at work now and feel well.

I am a single parent to an almost 10 year old girl and I have just met the man I believe I am going to marry. I turned 30 a couple of weeks ago. I have my whole future ahead of me and I am so petrified that it is all going to fall apart in a couple of weeks.

fergal.b

Hi ash23, sorry to hear of your troubles it's sounds like you had a tough year hopefully things will get better for you soon and if they do find something on the MRI you can start a treatment to help keep the fun in dysfunctional
It might be a bit early to be talking about MS but if it is you will still have your whole future ahead of you, it may not be the same as everyone else but then again you have managed as a single parent up till now so I'd say you could cope with anything life throws at you, nothing is going to fall apart in a few weeks you might be given a name of something you have but you will still be the same person you are today with the same 10 year girl and a new man by your side planning a future.
Keep strong and just deal with each little hurdle as it comes, try not to worry too much and stay positive you have your whole life ahead of you and it's going to be a roller coaster ride with some up's and down's but still great fun even if it does make you feel a bit quizzy at times.:)

Best wishes.





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