MS in all its glory

discobeaker · 06-01-2013 08:36PM

Hi all,

Bit late to reply to this. I met the team that are going to attempt to fix me the other day. Lovely bunch of people. Met the head professor and the MS nurse and they sat me down for like 3 hours and told me all they are planning to do.

Have to go for another MRI scan for my spine but that wont be for ages yet but im not being seen again until July so they will assess me then further after afew months on treatment.

Starting on 5 days of IV steroids tomorrow morning (in about 2 hours a day) then a week of steroid tablets to ween me off them then the week after im starting on treatment so i think im going to start on copaxane so all is good,im just dying to get on treatment and get back to living my life again.

WooHoo

byhookorbycrook · 06-01-2013 08:44PM

Sorry, Outnumbered, haven't a clue, can you ring the drug company nurse?

Discobeaker, starting on treatment is a good step.Best of luck with it.

pmct · 06-01-2013 08:53PM

discobeaker wrote: »

Aww thats cool . And do you find yourself getting more and more back to "normal"???? Its been so long since ive felt normal so i dont really remember what normal feels like. Ive been complaining for about 6 years about not feeling well but it was only in May till it was taken serious by the doctors.

Hi I was wondering how you were affected I haven't felt right for about three and a half years at the moment I am getting slight pins and needles use main worry is the nerves in my eyelids are twitching not always but fairly often

discobeaker · 06-01-2013 09:14PM

pmct wrote: »

Hi I was wondering how you were affected I haven't felt right for about three and a half years at the moment I am getting slight pins and needles use main worry is the nerves in my eyelids are twitching not always but fairly often

Hey there Pmct

How did i feel.... good question. Eh,well ive been complaining about feeling dodgy the last 5 or 6 years. I collapsed one night and that was kinda the start of it,i was really dizzy and it just never went away. About 14 months ago i kinda lost feeling in my right hand so i went to the doctor,im a music teacher so my hands are used alot,he put it down to an injury from playing or being on the computer alot,so in the space of a year it never really went away and my hand is still kinda numb.

Mid April/start of may i started havng a problem with my right eye,i wear glasses so i put it down to an infection or something,so i went for an eye test and after a 30 mins check up i was told to go to hospital the next day,was seen in the eye department in the mater hospital,had tons of different tests done (field test,fluroscene test etc) then got an MRI scan done in sept (my birthday actually) and was told i have MS a week later. 3 and a half months later im going to be starting the road to treatment in afew hours time thankfully

pmct · 06-01-2013 09:39PM

Thanks for the reply as I said I haven't been feeling right for a while there are a few things like I said twitching eyes a tingling feeling in my legs and a strange feeling down my back kinda like a nettle sting but not bad it's strange my doctor says its stress but I am not sure I am not sleeping great either thanks for any help ye can give

byhookorbycrook · 06-01-2013 09:41PM

The thing down your back-does it happen if you bend your head forward?

pmct · 06-01-2013 09:44PM

I am not sure but I think it could be it does go away when I sit up straight

discobeaker · 07-01-2013 02:07PM

Just back from day 1 of 5 on the Steroid IV. All good,in and out in an hour but my god..... the taste in your mouth :mad: Why does it give you a metallic taste in your mouth???? Why can it not be Bacon flavoured or something???

ash23 · 07-01-2013 02:17PM

discobeaker wrote: »

Just back from day 1 of 5 on the Steroid IV. All good,in and out in an hour but my god..... the taste in your mouth :mad: Why does it give you a metallic taste in your mouth???? Why can it not be Bacon flavoured or something???

Lol, yeah it's muck isn't it. Mints help.
It goes away after a few hours thank god but stick to bland foods while you're on them because anything strongly flavoured tastes really weird with it.

Hopefully they do the trick. They cleared up my optic neuritis pretty quickly but unfortunately the round I had before Christmas haven't done much for me in terms of helping with my numb and heavy arm and leg.

discobeaker · 07-01-2013 02:38PM

I wish i had of known about the mints before hand. My god it was horrible.

I would say it could take afew months of using the copaxone before you get the feeling back in your hand. They said to me on wednesday that it takes about 6 months before you get to feel the effects of it so you might have to wait or maybe ask about some steroid tablets maybe

ash23 · 07-01-2013 03:56PM

I don't think the copaxone helps in any way with the symptoms though (I could be wrong). I thought the copaxone just reduces the number of relapses as opposed to resolving the effects from the relapses I've already had.

byhookorbycrook · 07-01-2013 05:37PM

Not aware of Copaxone doing any reverals of symptoms. If there is an improvement,it is usually that the myelin has healed somewhat.

val444 · 07-01-2013 06:44PM

discobeaker wrote: »

Just back from day 1 of 5 on the Steroid IV. All good,in and out in an hour but my god..... the taste in your mouth :mad: Why does it give you a metallic taste in your mouth???? Why can it not be Bacon flavoured or something???

I actually don't get a metallic taste, to me it tastes like nail varnish remover! And I get a really tense jaw too so I bring those moam chewy sweets to the hospital. For some reason, minty things just made the taste worse.

discobeaker · 07-01-2013 09:40PM

I guzzled down 2 packs of mints as soon as i got out of the hospital and it still didnt taste great,think i will pick up some of them chewy sweets for tomorrows appointment.

Aww,maybe ye are right about the copaxone,im still reading the book about it (even got a snazzy Dvd with one of the books) so i think i got confused. My bad

Aurora Borealis · 07-01-2013 11:54PM

ash23 wrote: »

Hey all,
Is anyone seeing the MS nurse in Galway? Her name is Teresa I think.
My GP gave me the extension number but I can't find it. Tried ringing the switch in UHG but they aren't answering.
Thanks

Poo, thought I had her number in my phone to give you but alas not. Her name is Teresa Leahy, and she is so so brilliant at her job. I think the fact that she was wearing a very sophisticated suit atop mad stripey socks the first time i met her put me at my ease. I digress... You've more than likely gotten through to her at this stage anyhoo.

ash23 · 08-01-2013 08:47AM

Aurora Borealis wrote: »

Poo, thought I had her number in my phone to give you but alas not. Her name is Teresa Leahy, and she is so so brilliant at her job. I think the fact that she was wearing a very sophisticated suit atop mad stripey socks the first time i met her put me at my ease. I digress... You've more than likely gotten through to her at this stage anyhoo.

Thanks, I got the number from the GP but the nurse who was ringing me is called Bernie. I ring her in the morning and she rings me back when I'm coming home from work so we keep missing each other :rolleyes:
I'll get there eventually.

Oh, small tip for injectees. Don't use hand cream before injecting cos those syringes are slippery little buggers. I now have a massive bruise from it. My first bruise after 3 weeks. Not bad going

coughdrops · 09-01-2013 09:41AM

Morning everyone

I saw this on FB today, I might go along if I am in Dublin next week. I don't know anything about it, or the speaker, but it might be interesting:

Public lecture School of Biochemistry & Immunology 'Why do people get MS?' Jan 16th 6:30pm

Lecture Title: Why do people get MS?
Speaker: Prof Jean Fletcher
Venue: Stanley Quek Theatre, TBSI
School of Biochemistry & Immunology
Pearse Street.
Time and date: Wed, Jan 16th 6:30 pm
All welcome, admission free

byhookorbycrook · 09-01-2013 06:21PM

Lack of vit D is high on the list as to why, it seems.

Anyone watching the progress of the drug Campath?Looks to be very promising.

coughdrops · 10-01-2013 08:59AM

Was saying to my mam last night, at this stage I can't do anything about WHY I got it, I just have to live with it.

Vit D / location were what stuck with me. Neurologist showed me a map of hot-spots, and as I am up v north of Donegal, there seems to be a relevant link

I'm not familiar with campath, I don't really follow MS news as much as I guess I should. Bit of an ostrich approach!

ash23 · 10-01-2013 09:22AM

coughdrops wrote: »

Was saying to my mam last night, at this stage I can't do anything about WHY I got it, I just have to live with it.

I'm the same. Plus, if it was lack of Vit D, then it happened long before I had any say in it. And if I went on about it my mother would just end up feeling guilty.

It is important to figure it out though to prevent it in future generations or at least minimise the risk.

My boyfriend is doing my head in about it

Did any of you have a partner freak out after the diagnosis. He's a bit of a committment phobe at the best of times but since my diagnosis he's stressing even more about the future. About our future.
He also keeps telling me it's important to get out for a walk and get fresh air (he's a farmer). I keep pointing out that fresh air won't cure MS :rolleyes:

It's a relatively new relationship (just under a year) and with various relapses of mine since September and deaths in his family, we've had a bit of a whirlwind few months (and not in a good way). It's been ok but I think the effects of it are starting to show

coughdrops · 10-01-2013 09:59AM

Hi ash

My husband is a worrier. Worries about absolutely everything. However, he's not too bad about MS. At the start, when I ended up in hospital, he freaked a good bit. But I was (still am) fairly practical about it, and he reacted to that, and now he's much more relaxed about it.

You've had a hard year anyway (with deaths in family etc), so the MS isn't helping, but hopefully you'll see an improvement in your symptoms, and there will be less "dramatic" episodes. Like, there are days I can't really feel my fingers for example, and I hardly notice myself or even think to tell DH. You just kinda get used to it, it becomes a day-to-day thing. Once things settle down, and you are more confident with the meds and diagnosis, I am sure it will be easier for both of you.

And a bit of fresh air won't do you any harm

Sure, if it makes him feel like he's helping, I'd go for it .

ash23 · 10-01-2013 10:15AM

Hopefully a bit of time and he can see that life with MS will be pretty "normal" (obviously there are no guarantees but I'm optimistic!) and will stop fretting so much.

Big C · 10-01-2013 12:24PM

u find lots of info on meds, treatments, etc but very little on relationships, ms is a tough road for the individual but when partner is involved it can be great or disaster, every case differs

ash23 · 13-01-2013 10:15AM

I think we're at the crossroads of "great or disaster" and I'm not sure which way it's going to swing yet. Time will tell.

Must say, I am feeling much better this week. Have energy and feel far more like myself again. I was in a bit of a funk but am getting out of it and starting to feel like things are going back to normal.

(I shouldn't tempt fate - I'll prob get a relapse now!)

I suppose I had a relapse this time last year (not knowing it was a relapse) and was fine again for ages but from Sep to Jan was one relapse after another. 3 in quick succession so I had forgotten what it was to feel well.
My arm and leg are still a bit bothersome but nothing I can't live with. But the stress of not knowing and then the stress of finding out have gone and I'm just content and happy. I can't control the MS so no real point worrying about it. Just get on with things.

I just feel (surprisingly) like a weight has been lifted off me. Hard to explain.

Just glad to feel like me again.

coughdrops · 13-01-2013 11:39AM

I know exactly what you mean ash23. I remember feeling very similar. Hopefully it will all settle down for you, and you won't have too many problems day to day.

outnumbered82 · 13-01-2013 07:00PM

Thinking of joining a gym. Is there anything I should concentrate on that could help with ms symptoms or anything to avoid that could make them worse? In my mind I want to do one class one swim and on work out a week. Have a wedding to go to in June so want to shape up by then.

byhookorbycrook · 13-01-2013 08:20PM

Being too warm makes symptoms worse in many people,so maybe something more around endurance,rather than hot and sweaty?

val444 · 14-01-2013 11:15AM

Hi all.

I learned a lesson this week that I wanted to share with other newbies. I have been diagnosed for almost 18 months and one thing I find really difficult is knowing what to attribute to MS and what is unrelated. Anything that happens to me, I tend to assume MS.

I have been off form for about six weeks, sleeping all the time, catching everything going, weird sensations. I went to the neurologist and did a course of steroids but nothing changed. I was working as normal, not giving in to the exhaustion really until last Friday night, when I suddenly got the most vicious pain in my chest. It was so bad that southdoc sent me straight to hospital, fearing a pulmonary embolism. I have been in hospital since and have really struggled to breathe. This morning it was decided thst it is actually pneumonia and not PE which, while stilll serious, is actually a bit of a relief.

Anyway, lesson learned. Just because I have MS, does not mean I am immune to everything else out there!

coughdrops · 14-01-2013 11:55AM

God val444, you poor thing. You must have been scared witless! I hope you're beginning to feel better.

That's a really good piece of advice, as I do the same. I think it's because the MS symptoms can be so vague and varied, and the tiredness is never v far away, so if I start feeling exhausted MS is the first thing I blame.

discobeaker · 14-01-2013 12:40PM

hey all

I hope your all ok and Val,get better soon

I was wondering,i spent last week,Monday to Friday getting the Steroid IV and im on the oral steroids now 3 days but what i was wondering is,i feel absolutely rubbish,worse than i was before the IV. Im just really dizzy,my brain aint working well at all and im just not feeling the best,not ill or sick just very meh and dizzy. I dunno if im coming or going. Is this normal after the IV steroids??? They never mentioned anything like this in the hospital. Is this just a side effect that i have to ride out for afew days or has anyone any tips?

MS in all its glory

Comments