MS in all its glory

val444

Soz, dunno why my response went up twice! I am blaming my phone.

As mentioned actually, I am in the middle of three days of steroids, and I don't feel great. The last time I went for steroids, I remember feeling pumped, and raring to go. This time, I have developed a cough, a temperature, and a dodgy tummy. Its really weird. The nurses said that a sick tummy was unusual with steroids though, so maybe it is not connected?

The lack of sleep is also messing up my body clock, though I am not particularly sleepy at night - for the first time in months!

coughdrops

Hi val

There are some lousy bugs going around at the moment, you might have picked one up? Crap timing, on top of steroids! Hate when my sleep gets messed up, it really throws me out of synch. Hope you feel better soon.

ash23

Ugh I am starting steroids later today and dreading spending that time in the hospital with all the bugs that are going.

Hope you feel better soon val.

ash23

Just had a call from the nurse and she's meeting with me tomorrow.

byhookorbycrook

Val, you'll be grand. It's been very good to me, no relapses in 4 years. It's because of the JC+ and the length of time I'm on it that the risk is so high.It's also a good social point-we meet the same gang each month and learn a lot from each other.
Hope the steroids kick in and the tum gets sorted.

byhookorbycrook

Tysabi in a few short words: considered more effective than the ABC (Avonex,Betaferon,Copaxonne) but because of the risk of PML, it's usually not given as a first line drug(ie you have to try one of the others first.)It's given by infusion once a month, so no injecting.
60% of people (approx) carry the JC virus and it does no harm, but as Tysabri works by damping down the immune system, it's bad news for us as we can contract PML-for which there is no known cure and which has killed a no. of people.

All of that said, the neuro community are now very familar with Tysabri and what it does/doesn't do, so it's ahead of say Campath which is only coming to the market soon.It has been a real friend to me all along, I have been relapse free since 2009-having had two bad ones in three months befroe that.

val444

byhookorbycrook wrote: »

Tysabi in a few short words: considered more effective than the ABC (Avonex,Betaferon,Copaxonne) but because of the risk of PML, it's usually not given as a first line drug(ie you have to try one of the others first.)It's given by infusion once a month, so no injecting.
60% of people (approx) carry the JC virus and it does no harm, but as Tysabri works by damping down the immune system, it's bad news for us as we can contract PML-for which there is no known cure and which has killed a no. of people.

All of that said, the neuro community are now very familar with Tysabri and what it does/doesn't do, so it's ahead of say Campath which is only coming to the market soon.It has been a real friend to me all along, I have been relapse free since 2009-having had two bad ones in three months befroe that.

Thank you for this I had a bit of a chat with the nurses and other patients in the infusion centre about it today and feel a bit better about it now. It does put our baby plans on hold for a bit though, and I would be lying if I said I wasn't gutted about that.

Tummy is better thank god, but I was running a temperature today, think I have a chest infection on top of everything else! They weren't gonna give me the last infusion today at all, and there was even talk of admitting me but thankfully the doctor saw sense in the end, gave it to me, and a prescription for an antibiotic too, so I can avoid queuing in the doctors for hours the weekend before Christmas!

I have been struggling a bit at work this week. I am lucky in that my MS is very much an open secret and work are very accommodating. But I have been randomly popping out to the hospital all week and coming back high as a kite! How do others manage?

barrackali

val444 wrote: »

Thank you for this I had a bit of a chat with the nurses and other patients in the infusion centre about it today and feel a bit better about it now. It does put our baby plans on hold for a bit though, and I would be lying if I said I wasn't gutted about that.

Tummy is better thank god, but I was running a temperature today, think I have a chest infection on top of everything else! They weren't gonna give me the last infusion today at all, and there was even talk of admitting me but thankfully the doctor saw sense in the end, gave it to me, and a prescription for an antibiotic too, so I can avoid queuing in the doctors for hours the weekend before Christmas!

I have been struggling a bit at work this week. I am lucky in that my MS is very much an open secret and work are very accommodating. But I have been randomly popping out to the hospital all week and coming back high as a kite! How do others manage?

Some people do really well with Tysabri...others like myself haven't been that lucky. I was on it for 6 months, basically it caused me no end of problems.

I was obviously allergic to the compounds of the drug, within 10 mins of the 1st infusion I felt like throwing up, they gave me something to ease that.

Within an hour of returning home my lips started to swell, I ignored it as I was desperate for one drug to work. 6 months later it got to the point that my eye sockets were swollen, then I gave in on medical advice. I let them make the decision as I had gone through every single front line medication.

ash23

Val I'm struggling with work at the moment too. I was pretty open about the run up to diagnosis etc and work and my close colleagues are very good. The steroids didn't affect me too badly the last time but I had one dose yesterday evening and haven't slept a wink all night. Went to bed at half ten, lay awake unti; twelve and then woke at half 2 and have been awake since.
I've to be in work in just over an hour.

I had awful pins and needles in my legs last night and now both arms are numb and heavy, whereas before it was just the one.

I don't know what is being caused by the steroids and what is the copaxone. Realistically I need a few weeks off for getting over this flare because it's getting worse and not better. But I can't help but think how dodge it looks taking it off over the holidays.

coughdrops

My work are very good to me, and I've always felt I can take time off if I need to. However I HATE taking it! I'd rather be off with flu than "God my MS is flaring up and I am so tired with a numb arm"... even though they've never said anything to suggest it, I always imagine they think "faker".

@ash- I was in hospital for IV steroids when I was diagnosed and couldn't sleep a wink. It was summer time and so warm, and I used to have to go outside just to cool off. They were making me so hot and red. Then I was on oral steroids for 10 days when I came home, which just made me feel like sh*te. If you feel like you need time off, I'd take it. In my experience the longer I put off taking a few days sick the worse I feel by the time I take it (if that makes sense). Hopefully though when you've finished the steroids you'll feel a bit better anyway.

@val- I hope you don't have a chest infection, and that the antibiotic kicks in pretty quick.

val444

coughdrops wrote: »

My work are very good to me, and I've always felt I can take time off if I need to. However I HATE taking it! I'd rather be off with flu than "God my MS is flaring up and I am so tired with a numb arm"... even though they've never said anything to suggest it, I always imagine they think "faker".

@ash- I was in hospital for IV steroids when I was diagnosed and couldn't sleep a wink. It was summer time and so warm, and I used to have to go outside just to cool off. They were making me so hot and red. Then I was on oral steroids for 10 days when I came home, which just made me feel like sh*te. If you feel like you need time off, I'd take it. In my experience the longer I put off taking a few days sick the worse I feel by the time I take it (if that makes sense). Hopefully though when you've finished the steroids you'll feel a bit better anyway.

@val- I hope you don't have a chest infection, and that the antibiotic kicks in pretty quick.

I am exactly the same. If anything, I am now less likely to take a sick day than I was before I had an excuse! I have also applied for two promotions since my diagnosis, and got both, I think MS actually makes me more determined to succeed.

Deffo got some kind of infection anyway, hopefully the antibiotic will help me feel better for Christmas! I honestly feel like I have been hit with a truck. It is a combination of things, the lack of sleep over the past few days, my symptoms, how busy work is, the stress of being told definitively that the year I spent injecting Copaxone and putting up with the side effects may have been in vain. Christ, I am a terrible whinge today, I will immediately stop!

byhookorbycrook

Whinge away, we've all been there. MS drugs are serious stuff, so yes,they hit you hard, that's on top of various infections, flat out at work no doubt ,so don't be too hard on yourself.

ash23

I had a hard time of it today with the IV. I have about 8 various pinpricks now and a large swelling where the IV was started but it wasn't in the vein.

Long sleeves for Christmas!

Worried 27

Hi everyone! Happy Christmas!

I'm really sorry to be posting today with it being the day before Christmas Eve and all! As you know I was diagnosed in October with ms, I know the times the neuro recons I had attacks but I'm still not sure! It's so newbie if me! The last couple of days have been bad I've had my left arm go dead, tingling down my arm into my hand and numbness in my fingers! I hope I'm right in guessing its an attack!
My annoying question I guess is should I see a doctor, tell the neuro or do you just let it pass! I'm back with the neuro at the end of January anyway do I leave it to then to tell him? I've kinda left it to now because I was afraid of ruining Christmas for my little one if they sent me to hospital! I've never had IV steroids and by what I've read here it does not sound to pleasant.

Sorry for the annoying questions this is all still pretty new to me still!

Thanks.

val444

Hi Worried,

To be honest, it is kinda up to you. I was diagnosed in September 2011, and I am still confused about what constitutes a relapse, when I need to go to the doctor, etc. Generally, the MS nurse has told me to contact the neurologist if I am experiencing symptoms that I cannot put up with, or that are not going away.

If I were you, and this is not medical advice!, I would probably call the neuro after Christmas.

Worried 27

val444 wrote: »

Hi Worried,

To be honest, it is kinda up to you. I was diagnosed in September 2011, and I am still confused about what constitutes a relapse, when I need to go to the doctor, etc. Generally, the MS nurse has told me to contact the neurologist if I am experiencing symptoms that I cannot put up with, or that are not going away.

If I were you, and this is not medical advice!, I would probably call the neuro after Christmas.

Thanks val I was just not sure what the normal thing to do was! I did not want to upset Christmas anyway so I think I'll give the neuro a shout after Christmas! Xx

fergal.b

The numbness and tingling can come and go at any time so I wouldn't worry too much about, just try and enjoy Christmas as best you can and like you said get in touch with the neuro when you can.
Try not to worry and just concentrate on your little one it's better to have a memory of them at Christmas than a trip to hospital
There is no need to be sorry for posting at any time so you post away if you feel you want to there is always someone that has nothing better to do but to be on Boards at the moment I stuck here watching Mickey mouse clubhouse for the thousand time so any distraction is welcome:)

Best wishes to all and happy x-ms.



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ash23

Worried 27 wrote: »

Hi everyone! Happy Christmas!

I'm really sorry to be posting today with it being the day before Christmas Eve and all! As you know I was diagnosed in October with ms, I know the times the neuro recons I had attacks but I'm still not sure! It's so newbie if me! The last couple of days have been bad I've had my left arm go dead, tingling down my arm into my hand and numbness in my fingers! I hope I'm right in guessing its an attack!
My annoying question I guess is should I see a doctor, tell the neuro or do you just let it pass! I'm back with the neuro at the end of January anyway do I leave it to then to tell him? I've kinda left it to now because I was afraid of ruining Christmas for my little one if they sent me to hospital! I've never had IV steroids and by what I've read here it does not sound to pleasant.

Sorry for the annoying questions this is all still pretty new to me still!

Thanks.

Hi worried. I had similar symptoms for the last few months. Was diagnosed exactly a week ago and the Neuro decided to put me on steroids to alleviate the numbness. But there was no urgency about it.

I'd get in.touch with the Neuro after the holidays. Enjoy your Christmas.

discobeaker

Happy New Year to everyone on here. Just wanted to say thanks for all the help and info you all have given me over the last few months,this thread has been great help. Im meeting the MS nurse for the first time on thursday so hopefully i will get back to somewhat being my normal self in the coming weeks and months.

Thanks again all

ash23

Ditto that discobeaker.
It's only this week that the MS diagnosis isn't taking up my every waking moment. I'm glad that it's becoming less and less of a big deal.
I haven't arranged to meet the MS nurse yet, am leaving it for another week or so. Would you mind letting me know how you got on and if you find it useful?

My GP has given me the contact info for her but I'm putting it off a bit. I met the copaxone nurse alright but not the MS nurse.

discobeaker

I will let you know indeed. I think tomorrows meeting is just to chat about what treatment would work best and see how i feel in general. I still havent gotten my spinal tap results so i will probably get told about that as its been 2 months since i had it done.

ash23

It's amazing how different the diagnosis process is for everyone. I was basically told on the back of the MRI (not that I'm complaining about that!). Chatted to the consultant for about 10 mins about how I felt about starting treatment and which treatment to choose, was handed a prescription and sent on my way.

discobeaker

I had my MRI on my birthday (Sept 18th) told the results a week later,got my spinal tap first week of November and told nothing else,just to wait till im called which is thankfully tomorrow so hopefully i get on some kinda medication in the next week or so

ash23

discobeaker wrote: »

I had my MRI on my birthday (Sept 18th) told the results a week later,got my spinal tap first week of November and told nothing else,just to wait till im called which is thankfully tomorrow so hopefully i get on some kinda medication in the next week or so

That's pretty awful to be left so long. Around the time you had your MRI I was suffering with optic neuritis (also my 30th birthday in September) - the MRI was ordered and promptly forgotten about :rolleyes:
I had one neuro exam and chat with the consultant. I think at that stage I was pretty much accepting that I had MS so he diagnosed me, gave me the drugs and I started them that night. That's about 2 weeks ago now and no side effects (touch wood) so life is getting back to normal.

Best of luck tomorrow.

discobeaker

I had optic neuritis in May,went to get my eyes tested,thought i could have got an infection in it,was sent to the hospital first thing the next morning and i managed to get an MRI within 4 months. My MRI was on my 29th birthday so it wasnt a fun time.

Aww hopefully i will get to learn and hear more from the MS nurse tomorrow and just get on with life,positive thoughts and a positive attitude and make 2013 a great year MS or not.

How are you feeling on your treatment?

ash23

discobeaker wrote: »

How are you feeling on your treatment?

Great actually.I'm injecting copaxone daily. I get a bit sore just after injecting and it lasts about 20 minutes but other than that no side effects.

discobeaker

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.

ash23

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.

In certain respects I've been very lucky. Aside from being slightly less energetic this year I'd not really noticed much of a change other than the relapses.

So I feel the same. I'm glad the stresses of waiting for the diagnosis is over as that seemed to be taking over my life. I only have a few lesions, some if which were missed by the radiologist they were so small. So I think my MS is very early stages and my symptoms were (luckily) synonymous with ms so diagnosis was easy.
But other than a numb leg and needing to get 10 hours sleep a.night (minimum!) I don't think the MS has changed how I feel so the copaxone hasn't actually made any difference although I'm hoping it's working on the inside! I'll have to wait and see if I have any relapses in 2013 to know though.
As my consultant said, the treatment for ms is mainly reactive as opposed to proactive. So they wait and see what way the MS progresses before they can tell whether the drugs are working and they react if need be. As a bit if a control freak, that wAs hard for me to accept

ash23

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

outnumbered82

I lost the booklet that goes with my rebi smart device. The battery is going. It injects then turns off with the needle still in me. Is this effecting my injection and how do you change the battery.