MS in all its glory

byhookorbycrook

Re food, the best I can say is various fads come and go and to eat as healthily as possible, try to keep too much sugar and processed food to a minimum. There is a link between vit D levels and MS so vit D,B and omega oils.

There's a tiny, tiny genetic link it seems so I'd certainly say it to my gp. Hope your mam stays well.

Worried 27

Hey everyone just an update on how I got on after my first treatment of avonex! About 4 hrs after the side affects set in and I've never felt so sick! Headaches, feeling cold then hot and every muscle in my body hurt like never before! I got hardly any sleep that night. I did feel somewhat better when I got up on Friday but I was useless just sat on the couch and watched tv for the day! I have to say the last two days have been great! I really hope these side affects get less very quick I really don't know if I can handle being sick like that every week! The nurse rang to check in to see how I was doing she said that they should slowly get less! How long will it take for side affects to get less? I'm dreading my next injection because I know how sick I was!

byhookorbycrook

Did you take paracetemol beforehand?I used to make sure I didn't sleep during the day, whatever the temptation.About 2 hrs before bedtime seemed to work best for me.

Hope your side effects lesson quickly.

Worried 27

byhookorbycrook wrote: »

Did you take paracetemol beforehand?I used to make sure I didn't sleep during the day, whatever the temptation.About 2 hrs before bedtime seemed to work best for me.

Hope your side effects lesson quickly.

Yeah took the paracetamol before and she told me to take neurofen after which I took every four hrs and still felt like crap! I hope they lesson quickly to! Thanks x

val444

Hi mamakitten,

I have been on Copaxone for almost a year, and though my injection reactions had originally lessened, they are now back with a vengeance. I get horrible lumps, welts, bruises, and they really hurt. I too asked the nurse, who was less than helpful!

Quite by chance, my luggage went missing on a recent trip, and I was forced to inject manually, having packed the autoject in my checked in bag! It actually wasn't so bad, once I got up the nerve, and the reaction was much better, though still red and sore.

Maybe suggest that your husband try it?

mamakitten

val444 wrote: »

Hi mamakitten,

I have been on Copaxone for almost a year, and though my injection reactions had originally lessened, they are now back with a vengeance. I get horrible lumps, welts, bruises, and they really hurt. I too asked the nurse, who was less than helpful!

Quite by chance, my luggage went missing on a recent trip, and I was forced to inject manually, having packed the autoject in my checked in bag! It actually wasn't so bad, once I got up the nerve, and the reaction was much better, though still red and sore.

Maybe suggest that your husband try it?

Thanks for that, I just said it to him there and he said he would be a bit nervous to inject manually as he wouldnt know how deep to put the needle?

val444

mamakitten wrote: »

Thanks for that, I just said it to him there and he said he would be a bit nervous to inject manually as he wouldnt know how deep to put the needle?

To be honest, I didn't really think about it! Seems mad on reflection! I simply chose the fattiest part of me, pinched, and went for it! I think I stuck it in as far as it would go?

Maybe a nurse or doctor could teach your husband? All I know is that it hurt less, no bruise, and not as much redness either...

That or a couple of stiff drinks to steady the nerves!

coughdrops

Jaysis Val! Don't know if I'd be able for doing it myself, but thinking about it the autoject gives you quite a hard "kick" when you release the spring, so sticking it in yourself probably isn't as hard a jolt.

ash23

Hi all,
I am still in limbo. So annoyed. Had a brain and spinal MRI in mid October. Heard nothing and got no appointment for the neurologist. I mentioned it the same week I was down at the eye clinic (a call back because of the ON) and was told I wasn't "under" a nuerologist but the MRI results would be sent to the consultant who ordered them and they would most likely arrange an appointment.
Back to the eye clinic AGAIN yesterday and was told eye was grand, would be called back in a few months.
"So my MRI was clear?" says I.
"What MRI?" says he.

Grrrr.

So the MRI report has been sitting in limbo somewhere. Eye consultant is arranging a neuro appointment to "discuss results" because he can't give them to me. So another two weeks waiting to find out.

It's so frustrating.

val444

coughdrops wrote: »

Jaysis Val! Don't know if I'd be able for doing it myself, but thinking about it the autoject gives you quite a hard "kick" when you release the spring, so sticking it in yourself probably isn't as hard a jolt.

Its only talking about it now, that I realise how extreme it sounds! To be honest though, I had had such a terrible day, with cancelled flights, missing luggage and an eight hour train journey that injecting myself manually was the least of my problems! I had also drunk a whole bottle of wine!

I must try it again sober though...

val444

ash23 wrote: »

Hi all,
I am still in limbo. So annoyed. Had a brain and spinal MRI in mid October. Heard nothing and got no appointment for the neurologist. I mentioned it the same week I was down at the eye clinic (a call back because of the ON) and was told I wasn't "under" a nuerologist but the MRI results would be sent to the consultant who ordered them and they would most likely arrange an appointment.
Back to the eye clinic AGAIN yesterday and was told eye was grand, would be called back in a few months.
"So my MRI was clear?" says I.
"What MRI?" says he.

Grrrr.

So the MRI report has been sitting in limbo somewhere. Eye consultant is arranging a neuro appointment to "discuss results" because he can't give them to me. So another two weeks waiting to find out.

It's so frustrating.

Im sorry you are so delayed. I was quite lucky and felt that everything happened really quickly but I still had a six month wait between my first neurologist appointment and diagnosis.

Kicking up a fuss definitely helps though!

discobeaker

Just back from having my Lumbar Puncture and i was dreading it but it was grand. Not sore at all. So have to see the MS nurse in about 6 weeks time and hopefully start on treatment before Xmas

Its slowly all coming together

outnumbered82

Drink loads of coffee after your lp keep the head aches away!

discobeaker

Well i got it done about 10 hours ago and ive had no headaches. Im chugging down coke like its going out of fashion and having coffee every 2 hours so hopefully i wont get a headache. Im just pretty sore and tender at the moment

coughdrops

Glad you have it over you discobeaker!

discobeaker

coughdrops wrote: »

Glad you have it over you discobeaker!

I was dreading it but it was actually fine. Didnt bother with the local anaesthetic either so i even surprised myself. Im a big boy now

coughdrops

You're braver than me, and I didn't even have to get one!

discobeaker

coughdrops wrote: »

You're braver than me, and I didn't even have to get one!

Really? I was freaking out about getting it done but it was thankfully not painful and it all went to plan. In and out in just over 2 hours. Just gotta wait for 6 weeks or so and i should have my appointment to talk about treatment

coughdrops

Yeah, the thought of it gives me the heebie-jeebies . Not really sure why, but it always has.

Glad it went ok for you anyway

discobeaker

Aww it freaked me out too but it was grand. Thanks coughdrops

outnumbered82

It will be sore and tender for a few days then after that you may got the odd twinge. I was lucky to be in hospital when I got mine so got plenty of bed rest!

discobeaker

Well i am currently doing nothing..... actually,less than nothing and im just relaxing so i have the resting all sorted Just going to take it easy for the next while

Worried 27

Hi everyone,
I'm very upset tonight I feel like a right muppet! Went to do my avonex injection tonight for the first time on my own and I've messed it up! : ( I put it all together had it pressed against my leg the safety was off and the button would not press down! I tried it a couple of times without any joy! Then tried it again and I don't know whether I pulled it out or popped away from my leg but the solution ended up on the floor! Don't know how much went in! I'm dreading ringing the nurse tomorrow to tell her that I did not do it right, she will probably think I'm a right muppet to! Any advice would be great I don't know what to do! I cant sleep thinking about how I've messed up : (

val444

Worried 27 wrote: »

Hi everyone,
I'm very upset tonight I feel like a right muppet! Went to do my avonex injection tonight for the first time on my own and I've messed it up! : ( I put it all together had it pressed against my leg the safety was off and the button would not press down! I tried it a couple of times without any joy! Then tried it again and I don't know whether I pulled it out or popped away from my leg but the solution ended up on the floor! Don't know how much went in! I'm dreading ringing the nurse tomorrow to tell her that I did not do it right, she will probably think I'm a right muppet to! Any advice would be great I don't know what to do! I can sleep thinking about how I've messed up : (

Do not worry about it! This kind of thing happens! One time I forgot to take the cap off my Copaxone syringe, one time I was drunk and missed completely, getting it all over the floor, and another time, I was injecting myself in the bathroom, and actually dropped it in the toilet!

byhookorbycrook

Nurse will be delighted-all the more money for her drug company:D
Seriously though, I injected the sofa once (made it double in value instantly. A mere shooting off the button by accident is normal enough. Men use that excuse all the time:p:p

fergal.b

No need to feel upset or like a muppet your not the first nor the last, it's not going to make much of a difference in the scheme of things so don't worry about it. Fair play to you for having a go on your own it must have been on your mind all day but you did it "almost" you will look and laugh in time and soon you will be telling the next person that comes along your story to help them out.
Next time tell your partner that the nurse said you should practice on them first with an empty syringe that should put a smile on your face to see their reaction :eek: or if you like you can also practice on an orange.
Be proud of your self you did well and protected the floor from MS

Worried 27

Sorry all I just got the notifications of the posts now for some reason! It's cheered me up thinking I'm not the only one who has had a mishap! I guess I just felt like I had completely messed it up! I had gone out for the day to take my mind off having to do it but it did not work I had been stressing over it all day and I think my mind had been so focused on it I messed it up trying to do it right! I guess I just thought if I messed it up the ms nurse would be annoyed at me thinking she had to baby me! I guess I feel like I've let people down not being able to do it on my own! I'll do some practising before next week hopefully that will do the trick!

Sorry for sounding like a winge just wanna get it right!

ElleEm

Worried 27 wrote: »

Hi everyone,
I'm very upset tonight I feel like a right muppet! Went to do my avonex injection tonight for the first time on my own and I've messed it up! : ( I put it all together had it pressed against my leg the safety was off and the button would not press down! I tried it a couple of times without any joy! Then tried it again and I don't know whether I pulled it out or popped away from my leg but the solution ended up on the floor! Don't know how much went in! I'm dreading ringing the nurse tomorrow to tell her that I did not do it right, she will probably think I'm a right muppet to! Any advice would be great I don't know what to do! I cant sleep thinking about how I've messed up : (

It's more common than you think, the first time my boyfriend injected me, it ended up all over the fridge!!

It's tricky to get used to, but once you do, you will be doing it half asleep.

Give yourself time to get familiar with all the little steps. You are totally fine x

Worried 27

ElleEm wrote: »

It's more common than you think, the first time my boyfriend injected me, it ended up all over the fridge!!

It's tricky to get used to, but once you do, you will be doing it half asleep.

Give yourself time to get familiar with all the little steps. You are totally fine x

Thanks ElleEm,
I'm feeling much better about it knowing its common to have a mishap! I suppose its only been a couple of weeks I've been doing it and that was with the nurse looking at me! ; ) next week will be better i hope ; )

coughdrops

When you're not doing it every day it will take you time to get used to it. I am doing it every day for nearly 2 years and still have the odd cock up! I've taken the lid of the autoject before putting in the needle so the whole thing just fell out.

And the other day, I totally forgot to inject!