MS in all its glory

ElleEm · 06-12-2011 2:11pm

Fighting Irish wrote: »

Anyone use cannabis to relieve symptoms?

As it's illegal, I'm sure there will be a few cagey replies.
It's supposed to be suitable for some people's symptoms though.

val444 · 14-12-2011 8:16pm

So i started Copaxone today. I was not prepared for it to sting as badly as it did. The previous posters were definitely right, needle doesn't hurt a bit but the solution going in is a b***h. Still though, at least i have started treatment now! Feels like i have achieved something...

ElleEm · 14-12-2011 10:06pm

val444 wrote: »

So i started Copaxone today. I was not prepared for it to sting as badly as it did. The previous posters were definitely right, needle doesn't hurt a bit but the solution going in is a b***h. Still though, at least i have started treatment now! Feels like i have achieved something...

Wahoooooooo!

The first one is the hardest, and you've done it

It stings less and less as time goes on, I promise. I don't notice it at all now, except for in mu tush. That HATES being injected!

val444 · 14-12-2011 11:02pm

Haha, thanks. I do feel ridiculously proud of myself, i even rewarded myself with new clothes!

outnumbered82 · 15-12-2011 12:32am

You should be proud of your self you took the first big step, best of luck with the rest of them.

Leogirl · 04-01-2012 5:19pm

Love this thread - thanks you guys!! Nice to know I'm not the only one with fears & hopes when it comes to this disease. Lovely to see old timers supporting newbies.

Happy New Year everyone.x

byhookorbycrook · 04-01-2012 6:10pm

less of the "old timers!" young wan:D:D:D

Julybreeze · 04-01-2012 6:20pm

Hate MS so much right now, my Mam had just been in with Prof Hutch in St.Vincents for a review and he is starting her on iv steroids for a brain-stem relapse. She has been on oral steroids for 2+ weeks already but is still very symptomatic.

val444 · 04-01-2012 8:04pm

Julybreeze wrote: »

Hate MS so much right now, my Mam had just been in with Prof Hutch in St.Vincents for a review and he is starting her on iv steroids for a brain-stem relapse. She has been on oral steroids for 2+ weeks already but is still very symptomatic.

Im so sorry about your mam. Hopefully the iv ones will do the trick.

Leogirl · 05-01-2012 9:59am

byhookorbycrook wrote: »

less of the "old timers!" young wan:D:D:D

Haha!! I meant it in a good way - long time diagnosed, as opposed to older!! Diagnosed almost 10 years myself so I'd consider myself a bit of an old timer :-)

byhookorbycrook · 05-01-2012 11:33pm

hoping to get results of JC virus test with my next infusion this weekend, think I'll be staying on Tysabri anyhow, but a negative would be nice.

val444 · 06-01-2012 3:13pm

byhookorbycrook wrote: »

hoping to get results of JC virus test with my next infusion this weekend, think I'll be staying on Tysabri anyhow, but a negative would be nice.

I have my fingers crossed for you!

MS.ing · 06-01-2012 5:00pm

byhookorbycrook wrote: »

hoping to get results of JC virus test with my next infusion this weekend, think I'll be staying on Tysabri anyhow, but a negative would be nice.

I dont think they should be telling patients the results and maybe even that its a possibility. just one more thing to wreck our heads. it should be a flag for them to monitor more closely in the lab with our regular blood and urine tests which we have while taking it.

Id much rather I didnt know of the possibility and the bad stuff we sign to get the tysabri. and I got mine btw and it was the good result I wanted

but Id trade it for not knowing of the JC virus connection with tysabri.

byhookorbycrook · 06-01-2012 5:40pm

I want to make an informed choice as to the risks of PML and the risk/benefit ratio.
As to not knowing about PML,would you not agree that it's an important consideration in taking the infusion?Esp. now that there have been cases in Ireland

MS.ing · 06-01-2012 9:27pm

byhookorbycrook wrote: »

I want to make an informed choice as to the risks of PML and the risk/benefit ratio.
As to not knowing about PML,would you not agree that it's an important consideration in taking the infusion?Esp. now that there have been cases in Ireland

I would agree, but at the end of the day its 50/50 if you will or wont get it
like every other decision in life, two out comes, it will or wont happen :pac:

knowing that, Id much rather the lab guy/neurologist had to deal with the stress of it and leave me out of it!

dont get me wrong I know if you died there might be someone wondering thats not right we should been told there was a risk of this. but on balance its the neurologists job to do what they feel is best for the patient, or at least it should be.

byhookorbycrook · 06-01-2012 9:45pm

Both my neuro and gp are staight talking women, which is why I am so pleased with them. In any medical situation,I like to know what drugs I am getting, for what and why.

In the local hospital twice this year and they told me that I couldn't have an appendix pain as they took it out 3 yrs ago they hadn't and it burst. Same hospital tried to adminster a drug that I had already been given the max dose of ,only that I questioned it.

My point is that I like to be informed and to me, any information available helps me make a proper informed decision as to how I should proceed.

byhookorbycrook · 08-01-2012 3:17pm

Just back, am negative .Big relief as not everyone was.

outnumbered82 · 08-01-2012 11:36pm

Just a quick question, did any one find christmas very tiring, i felt like i needed to nap during the day to do the extra things that were on. I slept most of my way through the holidays because there was so much on I couldnt get through it all, from work to christmas parties to shopping i was wrecked by the end of it

Its my first holiday season having Ms and its the first time i realised that i cant keep up with all my friends with out being wrecked the next day.

Does any one else feel this way.

byhookorbycrook · 09-01-2012 8:47pm

Fatigue is a big issue for many people. I find I can "store up" some sleep but would not be able to go as late as I once did, but then non-MS friends tell me, it's old age and they feel the same way. Some people get meds from the neuro ,but I prefer not to.

outnumbered82 · 09-01-2012 11:43pm

I have been speaking with her before and she said try vitamins and diet but it didnt work, so now were going down the med route, i just couldnt take being tired all the time hoping it works. I was awful to be around i was narky and grumpy all the time bless my boyfriend and my family for putting up with me!!

byhookorbycrook · 09-01-2012 11:57pm

Berocca helps me,as does taking vit B,d and omega oils.

outnumbered82 · 26-01-2012 11:54pm

Starting on Amantadine 2m for fatigue has anyone else taken this?

Animord · 25-02-2012 10:46am

Hi, I am not a sufferer myself, but my close friend was diagnosed last year.

Earlier in the thread someone mentioned Dr Terry Wahls and her diet for MS - I see no one replied to it and just wondered if anyone here had actually tried using her methods?

bizmark · 25-02-2012 4:56pm

little worried that i havent had any meds since before november at this point and will still have to wait till April to even see the neuro tiny bit sick of the constant weakness in the right side of my face and body at this stage as well been nearly a year constant would really like to believe it will go away and stop effecting my breathing and eye but loseing hope at this stage oh wells onwards

ElleEm · 27-02-2012 1:58pm

bizmark wrote: »

little worried that i havent had any meds since before november at this point and will still have to wait till April to even see the neuro tiny bit sick of the constant weakness in the right side of my face and body at this stage as well been nearly a year constant would really like to believe it will go away and stop effecting my breathing and eye but loseing hope at this stage oh wells onwards

Hopefully they'll find you meds that work for you.

I have been relapse free since my first symptoms at diagnosis. That lasted for a few months but I am grand now. Few blips here and there but nothing majorr. Doesn't stop the fear of waking up broken any day though.

outnumbered82 · 03-03-2012 12:23am

Does anyone else get a slight onset of symptons when they are tired or run down? I seem to get a pain in my eye when im tired i had optic neuritis a few months ago.

byhookorbycrook · 03-03-2012 12:30pm

Things always worse when I'm tired, too hot or too cold.Any kind of infection doesn't help either.

hdunne · 16-03-2012 10:54pm

just heard that NICE in the UK has approved Gilenya so fingers crossed Ireland will follow suit. I started on this tablet this week and no side effects. I got this from drug company on compassionate grounds. i hope to have many months/years ahead relapse free, i came off betaferon last year to move to either tysabri or gilenya, happy i got tablet and it looks like will be approved soon.

val444 · 07-04-2012 8:04pm

Hi all,

Strange question, again! Several people over the past couple of weeks have commented about my eyes looking strange. I have now begun to notice it myself. Basically, my pupils seem to be two different sizes. This is worse in the morning. I googled it, as I do everything, and it seems that this happens to people who have experienced optical neuritis.

My eyesight has been absolutely fine, and I haven't noticed anything else. My VEP last summer showed nothing on my optical nerve. Has this happened to anyone else? I am due for an MRI in May anyway, so am not panicking, but I find it strange that I could have the aftermath of Optical Neuritis, with none of the symptoms?

Thanks!

byhookorbycrook · 07-04-2012 11:20pm

Val, haven't had anything optical, but I'd mention it to your neuro anyhow.
I know three people have started gillenya from our Tysabri group.Hopefully we will see it extended to others.

val444 · 08-04-2012 12:52am

byhookorbycrook wrote: »

Val, haven't had anything optical, but I'd mention it to your neuro anyhow.
I know three people have started gillenya from our Tysabri group.Hopefully we will see it extended to others.

Thanks for your response.

In regard to Gilenya, I have read a good few articles which seem to suggest that it might be unsafe? I think I would prefer to wait and see it proven first. I don't find the injections too bad and hopefully I will soon find out if they are working!

byhookorbycrook · 08-04-2012 9:51am

Gillenya has been associated with some cardiac deaths, but neuro says the number is not significant. Betaferon was associated with some skin cancr deaths, but again not significant. Each of our disease modifying drugs can have serious side effects, so it's always going to be a risk .

val444 · 08-04-2012 7:48pm

Yeah, I get that, and I can imagine that some people are very anxious to stop injecting themselves.

We shall see. I am going to stick with Copaxone for now anyway, I have been very lucky, long may it continue!

outnumbered82 · 11-04-2012 10:19pm

Im due back for my first review in 2 weeks im wondering what i need to do for it? Do i need to get bloods or any tests done?

byhookorbycrook · 12-04-2012 12:13pm

Review with neuro?What meds are you on?When I was on betaferon I had liver function tests done every 6 months, through the gp.

IM0 · 12-04-2012 3:22pm

you just turn up. they organise anything they would like from you

outnumbered82 · 12-04-2012 4:43pm

yea im going back to the neuro,Im on rebif ive had 2 blood tests in last 9 months so will go and get another one if they want any thing else im sure they'll soon let me know

pbarr · 12-04-2012 6:15pm

I notice the majority of posts here seem to be about the relapsing type of ms. Has anyone here got the primary progressive form of ms. I was diagnosed just over 2 years ago and since then after being through 3 different neuros none of them have proposed any medication for my condition despite it having progressed to me having to use 2 crutches to move around and a wheelchair for longer distances.
The only thing I did have was a course of iv steroids a year ago but any benefit from those are short lived.
Has anybody else found things the same as what I have which I can only describe as neglect by the medical profession.

byhookorbycrook · 12-04-2012 9:10pm

Pbarr, sorry to hear your needs are not being met. My neuro is fantastic. (Munster based)I know of one person on Prim. Progressive who is on LDN, but that's the only experience I have of it.

pbarr · 12-04-2012 10:03pm

I did try the ldn way back but stopped it because I didn't think it was helping any.

byhookorbycrook · 12-04-2012 11:01pm

Has your current neuro any suggestions?

pbarr · 12-04-2012 11:15pm

Only saw her for about 2 minutes at th clinic in Beaumont 2 months ago no mention of any meds at all I'm trying to get a private appointment with her at the moment.

coughdrops · 16-04-2012 10:37pm

Hi guys

I was diagnosed with MS in 2010, hope you don't mind me joining in. My diagnosis came after 2 years of being ridiculously tired- if I wasn't working I was sleeping, and symptoms that with hindsight were flagging MS at me for a long time.

It all came to a head May 2010 when I traipsed in and out to my GP over the space of 3 weeks with a list of symptoms, pain in my neck, numb from top of head down RHS to my fingers, loss of use in my hand, numb legs. Initially we thought it was a trapped nerve, and after a week on anti-inflammatories (which I ended up allergic to :rolleyes: ) with no improvements I was sent on to a neurologist.

I got diagnosed via MRI, and afer 3 days on IV steroids my symptoms subsided pretty quickly. I am now on Copaxone, and have been taking it without any real problems since Feb 11. I get some bad site reactions occasionally, but not all the time. I had been on Rebif for a couple of months before Copaxone, but it didn't agree with me at all. Once I got used to the daily jabs, I've found Copaxone has fitted in ok with my life.

Anyway, that's my story in a nutshell. Mostly I do ok. This time of year I seem to feel pretty crap- I don't really know if it is a coincidence, or if symptoms can be cyclical? I've not had a full blown relapse since diagnosis, but some days I feel a bit numb/tingly, and the tiredness comes back. I've been really tired the last 3 weeks, with my left foot and hands annoying me, I am hoping it will pass soon.

Thanks CD x

ElleEm · 17-04-2012 11:41am

coughdrops wrote: »

Hi guys

I was diagnosed with MS in 2010, hope you don't mind me joining in. My diagnosis came after 2 years of being ridiculously tired- if I wasn't working I was sleeping, and symptoms that with hindsight were flagging MS at me for a long time.

It all came to a head May 2010 when I traipsed in and out to my GP over the space of 3 weeks with a list of symptoms, pain in my neck, numb from top of head down RHS to my fingers, loss of use in my hand, numb legs. Initially we thought it was a trapped nerve, and after a week on anti-inflammatories (which I ended up allergic to :rolleyes: ) with no improvements I was sent on to a neurologist.

I got diagnosed via MRI, and afer 3 days on IV steroids my symptoms subsided pretty quickly. I am now on Copaxone, and have been taking it without any real problems since Feb 11. I get some bad site reactions occasionally, but not all the time. I had been on Rebif for a couple of months before Copaxone, but it didn't agree with me at all. Once I got used to the daily jabs, I've found Copaxone has fitted in ok with my life.

Anyway, that's my story in a nutshell. Mostly I do ok. This time of year I seem to feel pretty crap- I don't really know if it is a coincidence, or if symptoms can be cyclical? I've not had a full blown relapse since diagnosis, but some days I feel a bit numb/tingly, and the tiredness comes back. I've been really tired the last 3 weeks, with my left foot and hands annoying me, I am hoping it will pass soon.

Thanks CD x

Welcome, CD. Your story is very similar to mine, diagnosed in 2010, on Copaxone and similar symptoms. I'm fine at the minute though, which is great but it doesn't stop the fear that I may not be some day soon!

coughdrops · 17-04-2012 4:42pm

Thanks ElleEm, I'm a bit better today. Hoping the tiredness passes soon, as it's a killer!

ElleEm · 17-04-2012 4:49pm

coughdrops wrote: »

Thanks ElleEm, I'm a bit better today. Hoping the tiredness passes soon, as it's a killer!

I know. I remember quite recently crying in the kitchen cos I was just too tired to move. I needed to wash the dishes but was so so exhausted. Sometimes the tiredness is just inexplicable, but you have to ride it out.

coughdrops · 17-04-2012 6:07pm

I've had that cry! Sometimes it's a wave of tiredness, followed by tears (and the odd tantrum

) of frustration. Couldn't get my boot off the other day but my DH took it all in his stride. He's well used to me by now, the poor sod

byhookorbycrook · 17-04-2012 7:19pm

welcome to our little club, Coghdrops!

sqooka · 22-04-2012 10:54pm

A lot of people have mentioned the need to inform your car insurer in case they try to weasel out of paying for an accident, but what I was wondering is how they might find out? I realise that it make me seem incredibly dishonest, but the circumstances surrounding my diagnosis were a little unusual to say the least.....("amazing" to quote what the doctor mumbled through his surprise at my follow-up appointment)

byhookorbycrook · 22-04-2012 10:58pm

If you look at the small print it usually has something about conditions you need to inform them of. I really would suggest you get the letter from the neuro to say you are fit to drive and send it in,follow up with a phonecall.

The bit I was going to add:
Just to give you an idea of how insurance will weasel out:I know of a case where someone with a horsebox was in an accident in the middle of the day.Apparently one of the lights on the box was broken, even though it wasn't needed during the day, insurance said box not roadworthy and wouldn't cough up.

MS in all its glory

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