MS in all its glory

byhookorbycrook

The famyra is kicking in here. Went to the stable yard after work and was able to stand with my horse to let him graze for much longer that I could hve done before. Happy horse and owner!

ash23

Yeah things are good here too. Have so much energy. I had forgotten what it felt like to be honest. I'm still wrecked by bedtime but I'm getting out in the evenings and able to cook and clean the house, able to make plans with friends and am booked solid the next few weekends. Work is going well too.

All in all, I love Spring.

tatumkelly

Apologies in advance for moany cow post...

This week has been really stressful, wondering is this a factor in attacks...

I'm dropping everything; phone, keys, plates etc, struggling to grip a pen, and tingling sensation is making it difficult to sleep. It's the ridiculous clumsiness that's driving me mad...feeling very helpless..

I think I need to do something nice for myself to cheer me up...

Kick in the ass please?

byhookorbycrook

We can't balance on one foot to kick you in the ass ) Yes, stress can be linked to relapses. Tiredness also makes you more clumsy. Massage or some other treatment is my prescription.

ash23

I know that anytime I had a relapse it was linked to a stressful time in my life. A house move, another house move and waiting for the results of my MRI to see if I had MS.
So I try to avoid stress now at all costs!

tatumkelly

ash23 wrote: »

I know that anytime I had a relapse it was linked to a stressful time in my life. A house move, another house move and waiting for the results of my MRI to see if I had MS.
So I try to avoid stress now at all costs!

Seems to be a vicious cycle, the more stressed I get, the worse clumsiness and coordination gets and vice versa. I do know there's a lesson in there somewhere!

Optic neuritis is becoming troublesome too.

All the things I like to do to unwind usually are being made more difficult by attacks, and I think that's what's really upsetting me.

What do you guys do to get away from it?

ElleEm

tatumkelly wrote: »

Seems to be a vicious cycle, the more stressed I get, the worse clumsiness and coordination gets and vice versa. I do know there's a lesson in there somewhere!

Optic neuritis is becoming troublesome too.

All the things I like to do to unwind usually are being made more difficult by attacks, and I think that's what's really upsetting me.

What do you guys do to get away from it?

I found the ON really hard to cope with emotionally. I had double vision a lot, but an eyepatch helped. On days where it was less compliant, I listened to a lot of music. I missed reading, so I downloaded loads of radio documentaries and contemplated getting audiobooks, but never got around to it.

I meditate every day, and use aromatherapy to relax. I can notice symptoms flare up hours after I start stressing about stuff. It's a nightmare, cos I am a natural stresshead!

byhookorbycrook

I ride my horse to de-stress.

ash23

I don't actively try to de-stress. I just tend to overthink things all the time and I try to avoid doing that. I'll write all my worries down somewhere to get them out of my head or talk to a friend. But the main thing is to sort out the things I can control and the things I can't.
For the things I can't, I just have to accept it and not think or worry about it. For the things I can control, I do my best to get a handle on it.

I'm a single parent with a full time job in customer service so stress is unavoidable at times. But I have a lot of family support and my mum is great and will take my daughter for a weekend so I can rest, catch up with friends etc.

I also found the ON hard to deal with. Not being able to drive, watch tv, read etc......I was very bored! But at the time I didn't know I had MS so it didn't stress me out. Luckily I just had it in one eye so I also used an eye patch and that meant I could at least watch tv and use the internet.

byhookorbycrook

How are all the Mse-ers doing?Can we have a post where you say how long you were dx and what dmd you are on??

Diagnosed 2001 tried Betafernon, then Avonex,on Tysabri since 2009 and no relapses since.

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.

Claire22Cork

Hi everyone, any of you on Fampyra?
I'm on 2nd month of trial, its making such a difference to my walk and balance, delighted however it has caused two UTIs since I started - at least I'm assuming its the Fampyra, I'm not prone to them.
Would love to hear how anyone else finds it. I've been told my neuro nurse that Fampyra is unlikely to get funding / approval, which is crazy if it can make such a difference to a patient's lifestyle!!

byhookorbycrook

I'm on it since Feb, a lot looser and not at all as sore. Haven't had an UTIs since starting ,got a good few when I started on Tysabri, though.

byhookorbycrook

Answered on the other thread. I'm JC+ too, but staying put until Campath comes on stream.

Paddy James

byhookorbycrook wrote: »

When you say IV do you mean steroids?

Sorry yes steriods

ash23

Having a bad day. Had awful dreams last night about the MS and how I was going to be horribly disabled because two lesions were about to cut off my spinal cord at the neck. Woke up feeling thoroughly depressed.

Finished the steroids but the optic neuritis is still present although my cold/dose is gone. The sight is a little bit better but really would feel a whole lot better and reassured if it would just go away now.
I really just couldn't handle another relapse at the moment. Financially or emotionally.

tatumkelly

ash23 wrote: »

Having a bad day. Had awful dreams last night about the MS and how I was going to be horribly disabled because two lesions were about to cut off my spinal cord at the neck. Woke up feeling thoroughly depressed.

Finished the steroids but the optic neuritis is still present although my cold/dose is gone. The sight is a little bit better but really would feel a whole lot better and reassured if it would just go away now.
I really just couldn't handle another relapse at the moment. Financially or emotionally.

I find the ON really tough to deal with, though I am only recently diagnosed so maybe it's the diagnosis in general/the unfairness of it etc that I'm really battling with. I guess the only thing you can do is focus on the positives in your life, and that'll help keep your spirits up

As for the dreams, I guess that's your subconscious highlighting that you're stressed. Stress doesn't help your body, and will have a knock on effect on your relapses so try to relax. How's your diet overall? Diet plays a pretty key role in our mood, so it might be worth looking at to make sure you're giving your body the correct fuel it needs.

discobeaker

Had my 2 month check up with the copaxone nurse today. She is well happy with how im getting on with it and answered any questions i had. She said that it will be about 6 months on the treatment until i feel any real difference but im having more good days than bad one lately so im happy enough just wish this feckin weather would get abit warmer

byhookorbycrook

Bar the Fampyra, none of the drugs I take/have taken made me feel better. I don't think the Copaxone nurse could really back up the claim that it will make you feel better, tbh.

ash23

I'm 3 months on Copaxone and can't say it's made me feel any different. That was never a claim the neuro or the consultant made.
It just reduces relapses but it doesn't make you feel better or worse as far as I know.


My eye is still being bothersome. The illness is gone so I'm assuming this is another relapse. Sigh.

byhookorbycrook

Ash, how long ago did it start to cause issues? It could be residual damage or just slow to heal.