MS in all its glory

coughdrops

Well done discobeaker, that's another hurdle done and dusted. Hope you enjoy your treat!

I hadn't heard of MS Hugs before I read it here- had a google and think I might have had them before (but didn't know what it was at the time). I've gotten a pain across my back before, at the bottom of my ribs, which feels almost like I need to burp but I haven't had wind IYKWIM? It can be really sore, and I usually end up in bed. Didn't even occur to me that it might be a MS thing!

Shtanto

It'd be cheaper to the HSE if they'd ever bother to prove it works. Do they need more testimonials?

Leogirl

Hi all,

I'm a newbie here-thought it about time I 'meet' a few people with ms. :-)

I see you mention the ms hug- what is this? I get so many odd things - I never know what's ms!! If it doesn't last too long, I figure I don't need to worry.

ash23

Leogirl wrote: »

Hi all,

I'm a newbie here-thought it about time I 'meet' a few people with ms. :-)

I see you mention the ms hug- what is this? I get so many odd things - I never know what's ms!! If it doesn't last too long, I figure I don't need to worry.

Hi Leogirl,
For me the MS hug is like wearing a corset that is too tight. Just like someone is squeezing me tightly around the ribs. It is worse when I lie flat and it sometimes hurts to breathe deeply.
I had them quite bad last week but none this week. Fingers crossed they won't come back"

Leogirl

Hi Ash,

Ok I dont get that (thankfully by the sounds of it) - I get a lot of pain in my back/hips/shoulders but I'm so used to it now I dont take any heed of it normally & its probably nothing to do with MS. I think I've little to complain about reading some of the other posts here!

Knocknarea

Hi Leogirl, I am a newbie to the site too but not a newbie to MS was diagnosed this time last year. Thought it was about time I started to regain some control and see how others are doing and what's working well or not well as the case maybe

outnumbered82

I'm so tired today not bothered to do anything. Have a pain across my back and down my right leg. Feeling sorry for my self today

Leogirl

I'm thinking the same. I found I get more info from the people in the clinic than my GP or neuro - they're usually too busy to talk about anything they think is trivial. I know I'm quite lucky, have it nearly 10 years and not even a minor relapse but I do have the odd hiccup and concerns. I think it's time I found somewhere I can get advice on these- or just vent some days- or pick up some tips!! :-)

Touch wood- having a great few months. Is anyone else taking vit.D supplements? I started a month or 2 ago and I think it might be helping.

discobeaker

Hope you feel better soon outnumbered82

welcome to the forum Leogirl. I got diagnosed in Sept but ive learned ALOT from this thread and im still learning each day,like you say,i find its tough getting to speak with your MS nurse (my one is impossible to get hold off it seems) and doctors seem to fob you off so they can get onto the next patient quickly but i have found with this thread its also a great way to learn and to vent whenever your having a bad day cos we all have them.

As for the MS hugs,is it kinda like a tightness in your diaphragm (belly) kinda like,if there are any singers on here,when you go to sing you tighten your stomach muscles to project a note or to put power into it. Ive kinda felt like that the last week but im sure it will pass.

Ive done my 3rd injection today,kinda messed it up abit but i think it worked ok. Put the copaxone in the auto injector,pressed down the plunger on the needle (before you screw it back on to the autoinjector) and some of the copaxone went all over my table and bed so thankfully my bed is now MS free so i think i got about half a shot into me and half into my mattress

Leogirl

I've been on Rebif- nearly 10 years now and I still hate it!! My nurse kills me for skipping the odd one but I still get horrible site reactions and that flu feeling.

My cousin is about to start Avonex- no one else in the family is on it- has anyone tried it here? Any tips to make the first few a bit easier? He's dreading it!

Give it 6 months Discobreaker and you'll be a pro :-) How have you been finding the injections? It is hard to get your head around at first.

discobeaker

Yeah im finding the injections ok. Abit stingy but nothing too bad. Yesterdays injection went fine but today i had a bit of a nightmare but i was still half asleep when i was doing it so im putting it down to that but my mattress is now MS free so thats probably a good thing

It is tough to get my head around the injection but im sure it will be second nature once i have done it for afew weeks.

I dont know if anyone heard this but there is a talk in the red cow hotel on saturday from some doctors about MS. My copaxone nurse was telling me about it on monday. That lad,Conor devine,who was on the late late the other week talking about his MS is going to be giving a talk aswell. I think it could be a copaxone sponsored thing and im not too sure how you get an invite to it or if its free in but could be of interest to some people on here,especially people on copaxone. I dont think im going to get to it unfortunately (im too lazy haha) but someone on here might be interested in it

byhookorbycrook

The latest is that we all need loads of vitamin D, higher than the daily dose for non MS people
http://www.sciencedaily.com/releases/2012/10/121002091755.htm

Worried 27

Leogirl wrote: »

I've been on Rebif- nearly 10 years now and I still hate it!! My nurse kills me for skipping the odd one but I still get horrible site reactions and that flu feeling.

My cousin is about to start Avonex- no one else in the family is on it- has anyone tried it here? Any tips to make the first few a bit easier? He's dreading it!

Give it 6 months Discobreaker and you'll be a pro :-) How have you been finding the injections? It is hard to get your head around at first.

Hi leogirl welcome to the club! : ) I'm on avonex since October! I found the first month the worst i was so sick after doing it but it has slowly got better over the last couple of months! The ms nurse told me to take two paracetamol an hour before the injection and then two four hrs after taking the first ones! It does help a lot I find!!

I heard lots if people talk about horrible site reactions but I've never had any with the avonex just a couple of bruises!

I was back with my neuro this week he's not sure if I had a relapse over Christmas or if its my migraines without the headache! Unfortunately for me I have ms and migraines and some symptoms overlap! Like my face going numb and tingling and my arm on the left always goes dead when I've a migraine! He's having a tough time figuring out the ms for the migraines! He put me on vitamin D as well while I was in with him!

Hope everyone is doing well!

coughdrops

Welcome leogirl.

I've been thinking a lot about symptoms this week (mainly cos I seem to have a bit of a flare up), and what counts as an ms symptom and what doesn't.

I think I have more symptoms than I initially would have attributed to MS. Small things, like my scalp feels bruised occasionally. I'd have thought that was from me being too hard with the straighteners, but when I checked, other MS sufferers get sore scalps. So, now do I class it as a symptom or just "one of those things".

Then, I have a numb big toe. Not all the time, on and off. Feels like I was sat on my foot and it went dead. I don't even notice I have it most of the time.

My little finger is a bit stiff, again, nothing that is stopping me from typing etc, but it's definitely not as responsive/mobile as my other fingers.

Tingling- I have this a lot, down my back and arms.

Left leg feels hot, and heavy.

So... what I guess I am asking is... how do I know if it's MS or just something that'll pass? Generally, I don't count anything as a flare up/relapse/symptom unless it's really stopping me from day-to-day life. All of the above come and go, and some days I'd have to actually think "did I feel tingles today", so they aren't bothering me as such at all. But, should I be more mindful of smaller things that I am not really paying heed to?

Sorry for the musings! I'd be interested in hearing your thoughts however.

ash23

I think that a relapse is defined as any new symptoms or return/worsening of old symptoms lasting more than 24 hours and not accompanied by a rise in temperature (like if you were sick the rise in body temp can make MS symptoms worse)

My current relapse has been going on since Oct/Nov but some days are worse than others but it's there pretty consistently. The smaller stuff that comes and goes(aches and pain, various tingles), I just put down to old age/MS/Staying up late/Hangover......the usual.

coughdrops

ash23 wrote: »

The smaller stuff that comes and goes(aches and pain, various tingles), I just put down to old age/MS/Staying up late/Hangover......the usual.

That's what I do too. I don't pass much remarks on it unless it's full blown, and I can't do my day to day stuff. At the start when I was first diagnosed I'd think every time I had a tingly arm I needed to call the nurse or whatever I've not had a full relapse since starting meds, but I do have periods of being so tired, or sore, but I don't mention them as I know it will pass.

A full relapse is me not able to hold a pen or tie my shoes cos my right hand goes. So until that happens (or something of similar severity), am I right just to batter on, or should I be writing all these little things down?

ash23

coughdrops wrote: »

A full relapse is me not able to hold a pen or tie my shoes cos my right hand goes. So until that happens (or something of similar severity), am I right just to batter on, or should I be writing all these little things down?

I really don't know to be honest.

Personally I don't. I don't think I'd like to be focussing so much on it if you know what I mean? But everyone is different.

I don't think it really matters if it's fleeting though. I know at any of my neuro appointments they just wanted to hear about the big stuff. Any smaller issues I mentioned that could be attributed to other things (like loss of bladder control when I had a bad kidney infection) were not really followed up on, or even noted from what I could tell.

So for me, I took that to mean just worry about the big relapses, the stuff that is MS related for certain.

But if you feel more comfortable noting it, then you should.

coughdrops

Thanks ash23! Your approach sounds exactly the same as mine, and I don't tend to worry about the small stuff. In fact sometimes I think I am a bit too relaxed?

Anyway, thanks, I was mainly being nosey/curious about what other people do. I might start paying more attention to the smaller things, in case a pattern is there that I haven't noticed

CD x

byhookorbycrook

When I started on the betaferon ,there was a journal where you recorded MS stuff. After about 2 months I gave it up, because it was making me very negative.I think loss of bladder control would count as MS stuff though, UTI or not!!!

discobeaker

If anyone is about Dublin city on Saturday,there is a meeting in the IFI cafe in Temple bar at 2.30 thats run by Emma from MS Ireland

Hopefully you can see this link,you might have to join the website to see the invites but im not sure. Im hoping to go along on Saturday if im back in Dublin in time for it.

http://www.meetup.com/Dublin-Multiple-Sclerosis-Group/events/103198912/

XenaLady

Hi guys. It was great to find this thread, diagnosed with RRMS few days ago and starting with Copaxone next week
Its brill to see how people cope with this S-hite of a disease, helps me to get used to it

ash23

Sorry to hear about your diagnosis XenaLady.
I'm pretty new to this MS thing myself but I did and still do find it a great help to b able to talk to people in the same position.

discobeaker

Welcome Xenalady

I just started on Copaxone a week and a half ago and its so handy to do. I didnt like the idea of injecting myself everyday but im a week and a half in and it comes second nature to me now and i have had no side effects. Its still early days for me on Copaxone but if you need anything then just ask on here or drop me a PM

XenaLady

Indeed, and to see that the pain and cramps at night, dragging the leg after me or loosing my balance and falling in the middle of walking is something someone else is dealing with too and Im not the only one walking weird Its very comforting

ash23

XenaLady wrote: »

Indeed, and to see that the pain and cramps at night, dragging the leg after me or loosing my balance and falling in the middle of walking is something someone else is dealing with too and Im not the only one walking weird Its very comforting

I had a numb and heavy leg last year (before I was diagnosed). It went away fully and came back in November. I had IV steroids in December and the symptoms only started improving last week. I'm booked in for another round of IV steroids next week so I'm hoping that this remission will end soon and then I'm really hoping for a longish break before I relapse again. I'm on Copaxone since diagnosis so I'm optimistic about the prospect of a reasonable length of time before I get more symptoms again.

(we can but live in hope eh?)

XenaLady

Sorry to hear ash it took you so long to see any improvement. I heard that Copaxone should be good but I have no experience yet at all, I still hope I will never get another relaps again cos the one (and my first one) was quite an experience
Hope is good to live in

Worried 27

Hi zenalady I'm not long diagnosed only since October I'm still very new to the ms world! I do believe with out this thread I would probably still be all over the place but the people here have really helped and it helps to know there are people who are doing well with ms! When I was first told I imagined wheelchairs and all the bad stuff! It's great to have people who are living with it and know exactly how you feel!

The first month was the hardest telling family and friends and all the emotion that comes with it!

All I can say is stay positive and I hope your treatment goes well for you! X

byhookorbycrook

I was up front from day 1 and if anyone said "did you hurt your leg?"I told them straight out (more or less-took great pleasure in using it to embarass a rather nosey and nasty woman, how mean am I ?!! ) Make sure you are all getting lots of omega oils, B and D vits too.

Knocknarea

Xnealady sorry to hear about your diagnosis it's a bomb shell when you first find out. It's been a year since I found out, I was due to come back to work after my maternity leave when I got my first relapse and it was a hard old time. But I got back to work in September and gradually life returned to normal, a new normal that is ! Starting the DMD is tough at first but again you get there sooner than you think. There is a lot of information out there and I think you do need to be careful in spotting some of the "not so good advice" a couple of books I would recommend are Conor Devine Attitude is Everything just written by an Irish fella and the other is Overcoming Multiple Sclerosis George Jelinek. All in your own time mind you, it's taken me a year to come to terms to my MS and I only joined here last week !

ash23

I've started writing the days of the week on the packaging of my Copaxone injections because I wake up in the mornings trying to remember if I've injected the night before....... It's become such a usual part of my day that I can't even remember doing it lol.

So now at least I know if I've missed one. I know for sure I've missed one. I don't think I've missed any more than that but it's a handy way of keeping track.