MS in all its glory

ElleEm

Diagnosed in Oct 2010, aged 27. On Copaxone since Nov 2010 and have had a fair few "blips" since, only two that the docs considered to be enough to warrant oral steroids.

ash23

Diagnosed.15th Dec 2012. Started copaxone 16th Dec 12.

Worried 27

Diagnosed October 3 2012 started avonex 2 weeks later! Going well I think ; )

byhookorbycrook

Keep 'em coming.

pbarr

Diagnosed November 2009 with ppms on no meds whatsoever.

discobeaker

Diagnosed end of Sept 2012,started copaxone end of January just gone by. 7 weeks on it tomorrow

outnumbered82

Diagnosed July 2011 taking Rebif

coughdrops

Diagnosed July 2010, started Rebif Nov 10, changed to Copaxone in Feb 11. No relapses (just allergic to Rebif :-/ )

Paddy James

byhookorbycrook wrote: »

Gilenya is available in Ireland.A number of MS-ers I know are on it, having come off Tysabri. I'd be slow to change treatment if it is working for you,to be honest. I took betaferon for a number for years, using a cold pack before and after injecting on the sites helped.
When I was on betaferon, I arranged a check up by my neuro every 6 months(Private patient-so I paid). I only started on yearly MRIs when I switched to Tysabri and now, because I am JC+ I will have an MRI every 3 months

Hello

I am on it since September 2012 still have had IV treatment roughly every 3 months.

Have no problem with care and probably better as private. Can be long wait in public sector especially for an MRI and IV

Best of luck

byhookorbycrook

When you say IV do you mean steroids?

Leogirl

Diagnosed sept 2003, started Rebif nov 2003. No relapses since.

coughdrops

Hi guys

Hope you all had a good St Patrick's Day.

Question for those of you with ON, what kind of symptoms do you get? Over the last couple of months, on 3 occasions I've "seen" glitter floating, to my right (so I think just out my right eye). It doesn't last very long at all. Anyone heard of this happening?

Guess I am just curious, as I automatically went "oh probably ON", but I should be aware of other possible health conditions too.

ash23

coughdrops wrote: »

Hi guys

Hope you all had a good St Patrick's Day.

Question for those of you with ON, what kind of symptoms do you get? Over the last couple of months, on 3 occasions I've "seen" glitter floating, to my right (so I think just out my right eye). It doesn't last very long at all. Anyone heard of this happening?

Guess I am just curious, as I automatically went "oh probably ON", but I should be aware of other possible health conditions too.

When I had it, it felt initially like I was looking through clear jelly. As it got worse, I started having problems seeing light. For example, if I looked at a spot light in the ceiling, I could see the shape of it, but instead of the light in the centre, it was black. If I looked at a window, I could see the shape of the window but it was black in the centre. Very odd thing indeed.
If I looked at something red, it was black.
I only had ON in one eye, so it took me ages to cop it because my other eye was compensating.
Also, I had a sharp pain above my eye (my eyebrow) when I looked up or down or left/right. So, whenever I extended my optic nerve.



I actually came on here to ask the more experienced folk something lol.
I have a sore throat. And I have the beginnings of the ON in the same eye as the last time. I also had bad tingling in my leg over the weekend which passed with no problem.

It's not full blown ON - Just the cloudy vision, no problems seeing colour or light.

I know it might not be a relapse and might be just to do with being sick. But how do I manage it? Usually for something like this I just take paracetamol and treat it myself. But this is my first time being "sick" since diagnosis. Will I risk any damage if I let the illness run it's course? It might be viral which I know the GP can do nothing about. But if it's an infection am I better getting it sorted asap?
Basically I don't want to waste my time or the GPs but at the same time, I don't want to make things worse if I can help it.

What do ye do when an illness causes things to flare up?


ETA : I went ahead and made an appointment with the GP. If it is my immune system being stimulated by the illness, better to get it sorted if possible.

Leogirl

Hi Ash,

I've had many bugs, viruses etc over the years since diagnosis & usually the MS will act up a little bit - tingly/pins & needles, balance problems, fatigue etc (never got ON - even during my relapse), so far these things all passed within days.

I do think its no harm to go to the docs to rule out infections & get it looked after straight away - put your mind at ease, dont feel your wasting the doctors time. I think you'll find over time, you'll learn when to worry & when its just a regular cold or bug that you'll fight yourself. I do find that I am prone to picking up things and I take longer to get over things & I might get it a bit worse than regular folk. I'm sure my GP loves me - or his bank balance does!! :-)

Hope the docs appointment goes well.

loveisdivine

coughdrops wrote: »

Hi guys

Hope you all had a good St Patrick's Day.

Question for those of you with ON, what kind of symptoms do you get? Over the last couple of months, on 3 occasions I've "seen" glitter floating, to my right (so I think just out my right eye). It doesn't last very long at all. Anyone heard of this happening?

Guess I am just curious, as I automatically went "oh probably ON", but I should be aware of other possible health conditions too.

Does it look like this ? http://headacheandmigrainenews.com/news-images/migraine-aura-animation.jpg

This sounds very much like Aura Migraine. I get them and is exactly as you describe. You should be aware the Aura mgiraine doesnt always come with a headache. Like me, you can just get a visual disturbance and thats it. Usually starts in one eye and moves across my vision, lasting about 20 minutes. Then its gone.

coughdrops

thanks loveisdivine

No, it looks like glitter/sparkles floating down from above me. Like when a cloud of dust rises, and then settles, except sparkly! (it's pretty!)

It lasted less than a minute, so didn't disrupt my day or anything.

ash23

Just back from the GP. He gave me 5 days of steroids and antibiotics. He said the dose itself is minor enough but he'd rather not chance seeing how it develops. The ON isn't bad so fingers crossed the steroids will halt it before it takes hold.

The GP was lovely about it and said to come in for stuff like that rather than waiting.

So, more steroids. Oh joy. No sleep for me!

byhookorbycrook

If you'd like to do some ironing to pass the time, I'll leave out a key
Hope the steroids kick in,seriously.

ash23

byhookorbycrook wrote: »

If you'd like to do some ironing to pass the time, I'll leave out a key
Hope the steroids kick in,seriously.

I was up at 6am cleaning my kitchen. Gotta love those steroids!

byhookorbycrook

6 a.m. for housework???Good heavens!!

discobeaker

Had an MRI scan today,the doctors that are treating me asked me to get another one to see about lisions on my spine,the one i got done 6 months ago didnt have contrast or something on it,didnt sleep last night cos i was worried about the scan so i took a tablet to help me relax before i went in and i managed to fall asleep in the machine.... woops

ElleEm

discobeaker wrote: »

Had an MRI scan today,the doctors that are treating me asked me to get another one to see about lisions on my spine,the one i got done 6 months ago didnt have contrast or something on it,didnt sleep last night cos i was worried about the scan so i took a tablet to help me relax before i went in and i managed to fall asleep in the machine.... woops

Jesus, that's great. I hate the MRI machine! I was given a Valium for my first, then was an outpatient for my second, and thought I was really brave doing it unmedicated. I started crying and getting all panicky after they injected the dye, so they let my boyfriend stay in and hold my hand for the duration of the scan.

tatumkelly

ElleEm wrote: »

Jesus, that's great. I hate the MRI machine! I was given a Valium for my first, then was an outpatient for my second, and thought I was really brave doing it unmedicated. I started crying and getting all panicky after they injected the dye, so they let my boyfriend stay in and hold my hand for the duration of the scan.

That's so nice of them!

I'm a bit of a stress puker, and really really hate MRIs. I've never puked in the machine.....yet :eek:

Worried 27

Hi everyone, as always I'm probably about to ask a stupid question so apologies in advance! I had a new brain and spine MRI and I just got a letter back from the neuro saying that all is stable with no change from my last MRI which was 5 months ago! I guess my question is can you have a relapse that does not cause anymore lesions or would you always have a new or worse lesion if I had had a relapse?
I'm asking really because I was sure I had a relapse over Christmas when I had the flu I just thought the MRI would show signs of it?
Like I said still a newbie I'm just curious!

discobeaker

I think i was just so tired and then the tablet just knocked me out. I had ear plugs in and the headphones on so i couldnt hear a thing,it was so quiet so i happily nodded off. Only woke up when they were taking me out to inject the dye into me.

tatumkelly... i would kinda be the same as you,it stresses me out thinking about it then i get nervous then the sick tummy. I took a xanax an hour before i went in,put in ear plugs and the music was on so its super quiet and it was actually grand.

ash23

Worried 27 wrote: »

Hi everyone, as always I'm probably about to ask a stupid question so apologies in advance! I had a new brain and spine MRI and I just got a letter back from the neuro saying that all is stable with no change from my last MRI which was 5 months ago! I guess my question is can you have a relapse that does not cause anymore lesions or would you always have a new or worse lesion if I had had a relapse?
I'm asking really because I was sure I had a relapse over Christmas when I had the flu I just thought the MRI would show signs of it?
Like I said still a newbie I'm just curious!

I'm a newbie too but afaik, it's not considered a relapse if it's associated with an illness. I have a cold this week and my GP explained that because my immune system is fighting the cold, it's also causing the MS to flare. But it's not a true relapse.

Also, I had a relapse in September with optic neuritis and there was no evidence or damage showing on the MRI I had at the time. I don't think that all relapses cause demyelination which in turn is the cause of lesions.

Worried 27

ash23 wrote: »

I'm a newbie too but afaik, it's not considered a relapse if it's associated with an illness. I have a cold this week and my GP explained that because my immune system is fighting the cold, it's also causing the MS to flare. But it's not a true relapse.

Also, I had a relapse in September with optic neuritis and there was no evidence or damage showing on the MRI I had at the time. I don't think that all relapses cause demyelination which in turn is the cause of lesions.

Thanks for that ash I've learned something new again ; ) I think we are always learning with ms

ElleEm

I always feel MSy when I'm sick, and my GP has referred to it as a pseudo relapse or pseudo symptom. I remember going to the GP when I felt a bit "off", and weakness reappeared in my arm and hand, and before he entertained the MS idea he did a blood test to check for an infection. I had a kidney infection, and once that was treated, the weakness went away.

I think your immune system goes a bit mad trying to fight an infection/ virus and the MS gets all excited.

byhookorbycrook

Any illness can knock we MS-ers back, so even a common cold can make you feel relapse-y. Likewise ,being too warm or too cold can also cause you to feel yuk.
No new lesions is good news.
If I ha hold of my husband's hand when I am in an MRI, it would probably be squeezed to breaking point!!!!

Claire22Cork

Hi all, I'm starting Gilenya end of April. Have been on Tysabri for 4 years, but recently tested positive for JC.
Any of you trying Fampyra? I'm on trial for 6 months, I feel great benefits from it (walk & balance better) but unfortunately have 2nd UTI since I started 2 months ago.