MS in all its glory

Worried 27

byhookorbycrook wrote: »

You'll be fine. Have you someone to help with the injecting?You get trained but I always found it hard to get courage up to push the plunger/click the autoject as I am a bit of a wuss about things like that.

Yeah I've already told my husband that he's doing it until I find the courage to do it! I'll have to find it soon because he has to go out of the country for work in a couple of months for a couple of months! I'm sure it's something you get use to in time I'm just dreading the thought of it!

outnumbered82

I remember when I was told it was so easy telling everyone I didn't cry I ended up comforting those around me!!! But when they started ringing asking me to meet the drug company nurse and start taking the drugs hats when it hit home but it does get better. This time last year I was going away like I do every October and I remember feeling so crap everything was an effort I was up to the highest injection amount and was not getting on good at all. On hols all I wanted to do was sleep and couldn't even enjoy a nights out. This year I'm all packed and ready to go can't wait for it. So give yourself a year it does take time you'll have good days and bad days but after a while you'll end up having more good then bad

Worried 27

outnumbered82 wrote: »

I remember when I was told it was so easy telling everyone I didn't cry I ended up comforting those around me!!! But when they started ringing asking me to meet the drug company nurse and start taking the drugs hats when it hit home but it does get better. This time last year I was going away like I do every October and I remember feeling so crap everything was an effort I was up to the highest injection amount and was not getting on good at all. On hols all I wanted to do was sleep and couldn't even enjoy a nights out. This year I'm all packed and ready to go can't wait for it. So give yourself a year it does take time you'll have good days and bad days but after a while you'll end up having more good then bad

Thanks outnumbered82, hope you have a great holiday! I'm just gonna take every day as it comes I can't really do much more than that!

coughdrops

Hi Everyone

I got logged out again, and missed loads of updates! Sorry for not being on.

@discobeaker & worried27- I would say "welcome" but...;)
I haven't had a chance to read through all your posts, but wanted to tell you a bit about my experience. Finding out what was wrong with me ended 2 years of wondering, and it was the starting point to dealing with it. There were hard times and frustrating times, but you get through those. It's a sh*tty illness but I've found that I can manage pretty well. You have to be kind to yourself, and let yourself rest if you need to, listen to your body and don't push too hard (and if my husband read me advising that, he'd laugh... I know I am too hard on me). There are days I can't move from the couch, and I have to just accept that. But, most days, I am good, and I can get on with work, housework etc. If I am tired, I rest.

I am on Copaxone, so it's a daily injection. Most days I don't mind taking it- it's part of the up-shower-teeth-jab routine. Some days I am like a petulant child and sit there thinking "I'm just not going to take it today"... I can huff with myself/it good-o, for ages. But, I end up taking it, and you know it's not that bad. It's amazing how quick I got used to it. And I can really say it's reduced my symptoms. I've not had a bad relapse since I started it.

Re: dealing with other people and their opinions/worries/"advice"... it's hard. My parents took it really bad. My dad who can barely send a text message got someone to show him how to Google, and he spent days ringing me with info he'd read online. That broke my heart... I can deal with me, and my bad days, but I didn't want to be responsible for theirs. Then I had the people saying but you look ok... and not understanding (and how could they understand?) how b*llocksed tired I was. I'd be out for the night, and just want to go home. So you have to learn to be a wee bit selfish... don't overdo it to please others, as they aren't going to be the one lying in bed for 3 days. If someone gives advice, smile, thank them and say I'll bear it in mind... My husband gets me through the bad days, which are much less frequent than they were.

@ash23- I hope you are ok. If you do have MS, your life will change, but it doesn't have to be all about the MS... you are one strong lady if you've raised a little girl alone, MS won't beat you. I was 29 when I was diagnosed, and since then got married and done everything else that I planned to do. It might take me a bit longer, but I get there.

Anyway, that's me. Hope that helps a bit... PM me anytime if you like, and I promise to log in more.

CD

Worried 27

coughdrops wrote: »

Hi Everyone

I got logged out again, and missed loads of updates! Sorry for not being on.

@discobeaker & worried27- I would say "welcome" but...;)
I haven't had a chance to read through all your posts, but wanted to tell you a bit about my experience. Finding out what was wrong with me ended 2 years of wondering, and it was the starting point to dealing with it. There were hard times and frustrating times, but you get through those. It's a sh*tty illness but I've found that I can manage pretty well. You have to be kind to yourself, and let yourself rest if you need to, listen to your body and don't push too hard (and if my husband read me advising that, he'd laugh... I know I am too hard on me). There are days I can't move from the couch, and I have to just accept that. But, most days, I am good, and I can get on with work, housework etc. If I am tired, I rest.

Hi coughdrops,

Thanks for the advice I guess it's just really hitting home now that I'm going to start on the treatment I'm so worried about the side effects! I have a two year old daughter that has an endless amount of energy and I'm just afraid it's going to be hard keeping up with her if I do suffer those nasty side effects! To be honest I've never been so afraid of anything and its all I can think about since deciding to go on avonex yesterday! Maybe I'm just being stupid but I can't seem to help it! She's my little world and I just want to be at my best all the time! Then sometimes I just think that I need this treatment to keep me at my best, my head is just all over the place at the moment!

coughdrops

Hi worried27,

I hope it goes well for you, I really do.

We don't have kids yet, but it's something we hope to do. I can't give any advice on dealing with MS & children, but from experience with my nieces and nephews, 2 year olds are into everything. A friend of mine with MS has a 2 year old and baby. She manages well- she rests when she can. It's obviously not as easy as me just going to bed when I feel like it. But her parents and in-laws lend a hand. Do you have people who can take your little girl for the odd hour, to give you a rest? I am sure you are simply her mammy to her, and she's not going to know you aren't well, and I bet she's just the happiest wee thing with you regardless.

Is there a branch of MS Ireland near you? You could chat to them about it, as they will have far better advice than me! Saying that, I've still to ring them

I don't know about Avonex, I never really looked into it apart from first day when I was given the info on the 4 options. I started on Rebif and then moved to Copaxone. Once you get started on it, it will probably take a while to get into your system. Then, see how you get on. If you have any queries about side-effects (not sure what they are for Avonex), chat to the nurses etc. You can always move on to something else if it's not working for you. So far, I've not had any really bad side effects. Where I take my injection can be sore (but you soon learn the "good" spots), but that's about it. I can genuinely say I was feeling far worse before I started taking it, and had months of being dragged from the bed in the morning time. Sure, it took a while for the Copaxone to kick in, but since then, I've had a week off work in '11, a week off in '12 and the odd day in between. I can live with that!

pbarr

I made a similar post to this about 6 months ago but didn't really get much back on it so I'm posting it again. Has anyone here got the primary progressive form of ms and how are you getting on as regards progression and treatment etc. Most if not all of the posts on here seem to be about the remitting form of the disease.

Worried 27

Hi coughdrops, thanks again for the advice and support! Myself an my husband just returned from America at the start of this yr I'm so glad I was here getting this diagnosis so that I have my family around! I've a great family who are amazing but I always feel like I'm complaining and I don't think some of them totally understand what I'm going thru! I guess everyone gets a bit nervous about starting the treatment! Sorry for only replying now my two yr old is getting her final tooth! Oh the joys ; )

LittlemsSkelly

Hi all,
God its been awhile since I was last here. I'm delighted this thread is still going. I still remember the morning I posted it and thinking no one would be interested in talking about MS. How wrong I was!!!!

For those who are new to the MS way of life, one important thing to remember is adaptation. You will adapt to your illness, the things you are limited in, be it mobility, forgetfulness and so on will be complimented by the things you can. Always remember that MS is NOT a death sentence. If you want to get married, get married. If you want to have kids, have as many as you want. The only thing that limits people is themselves. If anything a dx of MS should be a kick up the arse to go for the things you want in life.

I've been diagnosed for almost 2 years, I'm 25 and don't let anything or anyone tell me I can't. I don't know about the rest of you and if you experience 'MS moments', but here are some of my most recent ones.....

1 - Fell asleep in an MRI, only realised that I'd been asleep when the tech stopped the MRI to wake me because I'd been talking and moving!!!!
2 - Put a full, recently boiled kettle in the fridge
3 - Talking to my boyfriend on the phone, looking around for the phone which was at my ear and in my hand for about 10 minutes????
4 - Had ON recently, and I tend to get dizzy when I have it. So I'm in work carrying about 5 9 packs of toilet rolls (work in a supermarket), when I dropped one and a guy I work with kicked it away thinking he was funny. So dizzy, half blind muggins bends down to get it at which point he kicks it again. So I stood up and proceeded to tell him in no uncertain terms precisely what a d1ck he was, roaring that he was insensitive and I had MS and he should have some compassion. I'm not even remotely like 'oh Ive MS and you should all be nice to me' but holy christ I let rip!!!!! He hasn't looked at me since :cool:

So to end this loooooonnngggg post, hope these stories have provided a bit of entertainment and hope you are all doing well. And to those recently diagnosed, sorry you get to join the club, but we're the coolest

coughdrops

Morning.... another Monday!

Do any of you find that you're wiped out at the weekend? I work from home mostly, and Mon-Fri I am busy working away. Then come Sat / Sun I feel lousy. Really tired. Yesterday I ended up back in bed for the afternoon, which annoys me as I want to be out and about with my husband. Now, it could just be my being a lazy sod but I've noticed it more and more at weekends, that after a hard week my body just aches for a rest.

byhookorbycrook

No, fatigue is part and parcel, you are not being lazy. It's an all-consuming thing when it hits, like no other tiredness I ever had.

coughdrops

byhookorbycrook wrote: »

No, fatigue is part and parcel, you are not being lazy. It's an all-consuming thing when it hits, like no other tiredness I ever had.

Thanks for the reply.

Yeah, the fatigue is awful. At the weekends recently I am not as bad as when I am really fatigued, but I was wondering if tiredness can accumulate throughout the week and then knock you sideways once you let yourself relax? Or am I imagining it?!

I am seriously tempted to look into a 3 day week at work, as I find 5 days quite hard to manage now, but I don't know if we could really afford the pay cut.

byhookorbycrook

I used to have to go to bed after work,made a whole cycle-tied, go to bed in evenings, be wide awake at night/tired etc.Now if it means even if i'm wrecked,I go for a little snooze on the couch ,rather than go to bed.I do find I can completely fold at weekends though.

It's all about pacing, not easy to get it right though.

discobeaker

Hospital in the morning to see the neurosurgeon to talk about my treatments and the 1 night i cant sleep is tonight and im WRECKED and just feel weak. WHY!!!!! **runs to the corner and cries**

coughdrops

discobeaker wrote: »

Hospital in the morning to see the neurosurgeon to talk about my treatments and the 1 night i cant sleep is tonight and im WRECKED and just feel weak. WHY!!!!! **runs to the corner and cries**

Hey discobeaker- I hope you got some sleep last night and good luck today x

Worried 27

discobeaker wrote: »

Hospital in the morning to see the neurosurgeon to talk about my treatments and the 1 night i cant sleep is tonight and im WRECKED and just feel weak. WHY!!!!! **runs to the corner and cries**

Good luck today it will all be fine, I was we're you are a couple of wks ago! Sorry not had a chance to pm!

Deedee2012

Hi just wondering do any of you that have MS have siblings that also have MS? I have had various symptoms over the last year or so, particularly bad for a month earlier this year, saw a neuro who said I had a clear MRI, I had no other test, I still was kind of worried but put it to the back of my mind until this month. My sister has for the last month being having a lot of symptoms and is currently having tests, her GP does think MS but obviously her Neuro is doing the some testing. So I suppose I'm wondering the likelihood of us both having MS or is there something else we could both have? I'm currently well and about to do my first marathon, I was so pleased when I could use my legs again earlier in the year that I promised myself I'd run the marathon to celebrate! Thanks in advance for any replies.

byhookorbycrook

There is a very small genetic link, I've been told.Hope you're in the clear,though.

discobeaker

Thanks for the messages

Didnt manage to sleep in the end so i was wrecked going to the hospital. I had to go to the eye clinic but it turns out i didnt have to go. Got talking to a lovely doctor and told her that i thought my appointment was to talk about treatment for MS so she checked my chart and future appointments and she was disgusted to see that even though i have been diagnosed,they havent given me a date to see my neuro so she wrote them a letter to make me urgent and low and behold 3 hours later i had one of the neuro's team looking at me so i got given my date for the lumbar puncture.

8 and a half hours in the mater hospital with no sleep was no fun but at least i got a step closer to treatment and i dont have to wait to get see the neuro's (apparently the doctor who made me urgent was saying it could be 2 years to see a neuro,is this right???)

Oh i will sleep well tonight

LittlemsSkelly

Hi Discobeaker

I was symptomatic from April 2010, ON, double vision, vertigo etc. So I paid privately for a neurologist and opthalmic surgeon, not health insurance because I was 23 and didn't think that I'd get sick so young but I digress....
Anyway, was told in the May 'yea it's probably MS'. I had an MRI done and there was a couple of lesions but nothing conclusive because apparently you can have these symptoms due to an infection. So I was told 'wait until it happens again', they gave me an appointment for March 2011 and this appointment was just for an initial assessment from another public neurologist. They were lovely but I felt so cheated because in my mind I was thinking they're willingly going to let me get worse???

So the ON got no worse, no better. And for those who have had it, you'll know how much it hurts. Think I had about 5-10% vision in my right eye for 6 months and then I got it in my left eye, not a bad but still enough for me to think I'd be blind!!! So I was referred to the nicest doctor any person could ever meet, took one look at me and I was admitted that day. This was late August/early September, months ahead of my scheduled appointment, I got another MRI, HIV test, Lyme disease investigations (all can have similar symptoms to MS, I'm not riddled!!!), an LP and IV steroids. 8 weeks later the CSF was results were back, definite diagnosis and here I am almost 2 years later doing great.

I won't lie and say 'ah it was grand' because it wasn't, it sucked. But at the end of the day life goes on. I have full vision in both eyes, and although I've had a couple of bouts of ON since then, the only damage done has been that one pupil is larger than the other. I got my degree, doing a masters next year, I work and I'm an active volunteer so there is a light at the end of what is a seemingly endless tunnel!!!! Although I do get very fatigued but thats what coffee is for!

coughdrops

Hi discobeaker

I got referred to a private neurologist first in St Vincents, and then once he had diagnosed me I was referred on to the public neurology dept there. I think from my GP sending the initial referral letter to diagnosis / admittance to hospital (I had to get IV steroids) was May-July 2010. It was pretty quick. I had health insurance though.

Since July 2010 I've not had any private treatment, and so far I've had a positive experience with the public dept.

byhookorbycrook

Result,Disco!!

I am suggesting everyone here scrapes money for private insurance, down the line you may need tysabri and it's being tightly rationed for public patients.

val444

pbarr wrote: »

I made a similar post to this about 6 months ago but didn't really get much back on it so I'm posting it again. Has anyone here got the primary progressive form of ms and how are you getting on as regards progression and treatment etc. Most if not all of the posts on here seem to be about the remitting form of the disease.

Hi pbarr! I am sorry that you are being ignored on here, please do not think us rude. I am guessing that nobody on here knows much about PPMS and to be honest, neither do I.

When I was first diagnosed, I was told that it was likely to be relapsing remitting. Now though, my neurologist thinks it could be "Progressive Relapsing" which is something I had never even heard of! I am actually gutted, and hoping she is wrong, as it sounds like the worst of both worlds!

Is it you who has MS or someone you care about? Please feel free to share your story!

discobeaker

Sorry for the late reply.

Its been crazy lately and today was the icing on the cake after my month from hell (well 32 days actually). My beloved dog passed away this afternoon so whats next (the other things that happened this last month were my MRI,getting diagnosed and my grandad having a heart attack) Somebody REALLY doesnt like me

Maybe next month and beginning treatment might bring me better luck.

Just got a letter yesterday saying that my Lumbar Puncture is November 5th. Im glad its starting to move along and get me closer to treatment. My 9 hours in hospital on Tuesday has paid off thankfully

Worried 27

Hi discobeaker, really sorry to hear how horrible your month has been! I can't imagine how you are feeling! I just hope everything moves quickly with your treatment now and then at least you will feel better health wise anyway! Take care x

byhookorbycrook

Disco, sorry to hear things are so cr*ppy at the moment.

discobeaker

Oh.... i forgot to ask. This is a total newbie question but i will probably be starting treatment next month maybe but is injections the only way you can get treatment? Can you get it in tablet form? Also with the injections do you inject it into you veins or would u be able to just inject it into your butt or tummy like someone who is diabetic.

Sorry for the dumb questions. Im still learning!!!!

outnumbered82

You have to start on injections. The tablets have just come out so they are not widely available.

You inject into your thighs tummy bum or some say you can do the top of your arms anywhere there is a bit of fat. I do my legs and bum. You pick new spots every injection so you give the skin time to heal

discobeaker

Aww thats great. thanks for the info outnumbered.

When my doctor was explaining it to me i totally forgot to ask what way you inject.

outnumbered82

If you have an I phone or I pad you can get an app from Rebif called my support you should get it if your thinking about Rebif