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**fergal.b** · 09-08-2012, 22:11

My wife started on it a few weeks ago and has had no side affects like she did on the rebif, it's a bit early yet but so far so good

**byhookorbycrook** · 09-08-2012, 22:46

Quote:

Originally Posted by Mushaboom

Hey All,

Anyone here on Gilenya? I'm currently deciding whether to go on it or not and I'm trying to source as much info as possible on it. I wanted to be offered it and now that I have I'm having second thoughts, silly really.

Mush

Why are you thinking of it now?

Worried 27 · 09-08-2012, 23:02

[Quote=byhookorbycrook;80154476]Worried, people(in full health of course) tellling me "Ah sure it could be worse you could have cancer/leprosy/the galloping whatever" came close to getting a few slaps at the time. I had to decide ,in my own time, yes, it could be worse, but don't try and patronise me!

I was diagnosed in 2001, am still working, riding my horse etc. Sure, life is different, sure there are times I cry for not being able to go places/do things,but at the end of the day,we are all still alive.

There is great work going on with all kinds of research. I am on Tysabri, which initally freaked me out because I googled...a very kind poster here sent me a few p.ms and really helped. (I actually met them after at Tysabri infusions.)Keep in touch and we'll try and help you as much as we can. Stay strong. X[/Quote

Byhookorbycrook, it's great to finally have people on here who understand what I'm thinking and feeling. People with really knowledge of ms im really only starting to get to know really what I might have to face. Just hope I get diagnosed soon with whatever I have but I'm pretty sure it's ms and the doctor seemed pretty convinced that it is ms to.

I'll do my best to stay positive not always easy when u don't feel well and you know there is something wrong. X

Mushaboom · 10-08-2012, 00:49

Quote:

Originally Posted by byhookorbycrook

Quote:

Originally Posted by Mushaboom

Hey All,

Anyone here on Gilenya? I'm currently deciding whether to go on it or not and I'm trying to source as much info as possible on it. I wanted to be offered it and now that I have I'm having second thoughts, silly really.

Mush

Why are you thinking of it now?

I was taken off the rebif and offered gilenya or copaxone. Trying to decide but actually finding the decision quite hard.

Mushaboom · 10-08-2012, 00:50

Quote:

Originally Posted by fergal.b

My wife started on it a few weeks ago and has had no side affects like she did on the rebif, it's a bit early yet but so far so good

That's great to hear, thanks Fergal.

Worried 27 · 10-08-2012, 10:08

Hey everyone just wondering I'm still waiting on the LP results can they tell for sure from testing it that I have ms or will I need more tests done when I see the neuro

**byhookorbycrook** · 10-08-2012, 19:50

Mushaboom, any talk of Tysabri for you?

Worried, a LP and MRI are the most common tests, there is no one test for MS, which makes it so hard to diagnose.

Worried 27 · 10-08-2012, 20:19

Quote:

Originally Posted by byhookorbycrook

Mushaboom, any talk of Tysabri for you?

Worried, a LP and MRI are the most common tests, thyere is no one test for MS, which makes it so hard to diagnose.

Byhookorbycrook, thanks for the reply, I got the LP done a few weeks ago and I'm still waiting on the results apparently the hospital they sent it to to be tested said what ever machine that does it was not working that's why it's taking so long to Come back. Was hoping to have results this week but no news as yet. Good to know I've the two most common tests done anyway. Hopefully the results will come soon.
Thanks again

Mushaboom · 10-08-2012, 22:41

Quote:

Originally Posted by byhookorbycrook

Mushaboom, any talk of Tysabri for you?

No mention of it, for me anyway. Had another MRI today so maybe when they see the results!

**byhookorbycrook** · 10-08-2012, 22:55

Tysabri has been very good to me, no relapses since 2009I'd ask why it's not mentioned.

val444 · 14-08-2012, 10:29

@Mush,

I have been on Copaxone for eight months, but the neurologist now wants me to try Gilenya or Tysabri. I didn't mind Copaxone at all, injecting every day doesn't bother me though, it might bother some people. I do have some fairly significant reactions, which I ignored when I thought Copaxone was doing its thing. Now that I have learned that it is not, I am a bit more frustrated when faced with a big hot itchy lump every night!

I am leaning towards Tysabri at the moment, rather than Gilenya, because Gilenya can slow your heart rate, and mine is actually pretty slow as it is! However, I kinda feel like I am being pushed to have a baby first! My original plan had been to give the Copaxone two years to work, and then come off it to try and get pregnant. Now however, as it isn't working, rather than start on a new regimen straight away, the doc thinks I could just take the opportunity to have a baby now! Not sure yet, have until January to decide!

Actually, this information might be useful for other women faced with this issue. I always thought that you had to be trying for a baby for a certain length of time before you could investigate possible reasons for not getting pregnant. However, I spoke to my GP recently about my worries about not being on any MS medication while trying to conceive, and she immediately ran blood tests, and scheduled an ultrasound to make sure all my bits were in working order. Next we will check out my husband. I know there are no guarantees, but at least I won't be trying for years in vain while not knowing about any possible obstacles!

discobeaker · 14-08-2012, 18:34

Can someone explain to be what the episodes or relapses are??? I spoke to someone about it and he told me but he was in a rush so i didnt get the full meaning of it. He was saying something about his legs went numb and he couldnt walk. Do they vary or how do you know your having one???

Im a month away from my MRI scan so im just trying to get as much info as i can. This thread has been really helpful

Mushaboom · 14-08-2012, 20:04

@Val

That sounds like a very daunting choice in front of you. If you feel it's not the right time, I wonder what would be wrong with trying a new treatment for a year or two before trying to conceive? At least you'll have a treament you're happy with to go back onto. But in saying that it's never a good time to have a baby so now is probably as good a time as any lol.

Mushaboom · 14-08-2012, 20:34

Hey Discobeaker,

I'd advise you look on the MS Ireland website, shift MS is a great one too with you tube videos. It might be helpful in your research.

Try not to stress out though, it's different for everyone.

Mush

discobeaker · 14-08-2012, 20:36

Thanks for that Musha.

Im trying not to stress,the next month is going to drag by but im trying to stay busy and keep my mind off things. I must check out the You tube you mentioned. Thats alot of help. Thanks again

10-08-2012, 19:50	#262
byhookorbycrook Moderator Join Date: Aug 2008 Posts: 5,098 Adverts \| Friends Mod: Carlow, Primary & Pre School	Mushaboom, any talk of Tysabri for you? Worried, a LP and MRI are the most common tests, there is no one test for MS, which makes it so hard to diagnose. Last edited by byhookorbycrook; 10-08-2012 at 19:53.

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09-08-2012, 22:11	#256
fergal.b Moderator Join Date: Jul 2010 Location: Balrothery,Co Dublin Posts: 2,474 Adverts \| Friends Mod: Sailing & Boating	My wife started on it a few weeks ago and has had no side affects like she did on the rebif, it's a bit early yet but so far so good

09-08-2012, 23:02	#258
Worried 27 Registered User Join Date: Aug 2012 Posts: 62 Adverts \| Friends	[Quote=byhookorbycrook;80154476]Worried, people(in full health of course) tellling me "Ah sure it could be worse you could have cancer/leprosy/the galloping whatever" came close to getting a few slaps at the time. I had to decide ,in my own time, yes, it could be worse, but don't try and patronise me! I was diagnosed in 2001, am still working, riding my horse etc. Sure, life is different, sure there are times I cry for not being able to go places/do things,but at the end of the day,we are all still alive. There is great work going on with all kinds of research. I am on Tysabri, which initally freaked me out because I googled...a very kind poster here sent me a few p.ms and really helped. (I actually met them after at Tysabri infusions.)Keep in touch and we'll try and help you as much as we can. Stay strong. X[/Quote Byhookorbycrook, it's great to finally have people on here who understand what I'm thinking and feeling. People with really knowledge of ms im really only starting to get to know really what I might have to face. Just hope I get diagnosed soon with whatever I have but I'm pretty sure it's ms and the doctor seemed pretty convinced that it is ms to. I'll do my best to stay positive not always easy when u don't feel well and you know there is something wrong. X

10-08-2012, 10:08	#261
Worried 27 Registered User Join Date: Aug 2012 Posts: 62 Adverts \| Friends	Hey everyone just wondering I'm still waiting on the LP results can they tell for sure from testing it that I have ms or will I need more tests done when I see the neuro

10-08-2012, 22:55	#265
byhookorbycrook Moderator Join Date: Aug 2008 Posts: 5,098 Adverts \| Friends Mod: Carlow, Primary & Pre School	Tysabri has been very good to me, no relapses since 2009I'd ask why it's not mentioned.

14-08-2012, 10:29	#266
val444 Registered User Join Date: Jun 2011 Posts: 90 Adverts \| Friends	@Mush, I have been on Copaxone for eight months, but the neurologist now wants me to try Gilenya or Tysabri. I didn't mind Copaxone at all, injecting every day doesn't bother me though, it might bother some people. I do have some fairly significant reactions, which I ignored when I thought Copaxone was doing its thing. Now that I have learned that it is not, I am a bit more frustrated when faced with a big hot itchy lump every night! I am leaning towards Tysabri at the moment, rather than Gilenya, because Gilenya can slow your heart rate, and mine is actually pretty slow as it is! However, I kinda feel like I am being pushed to have a baby first! My original plan had been to give the Copaxone two years to work, and then come off it to try and get pregnant. Now however, as it isn't working, rather than start on a new regimen straight away, the doc thinks I could just take the opportunity to have a baby now! Not sure yet, have until January to decide! Actually, this information might be useful for other women faced with this issue. I always thought that you had to be trying for a baby for a certain length of time before you could investigate possible reasons for not getting pregnant. However, I spoke to my GP recently about my worries about not being on any MS medication while trying to conceive, and she immediately ran blood tests, and scheduled an ultrasound to make sure all my bits were in working order. Next we will check out my husband. I know there are no guarantees, but at least I won't be trying for years in vain while not knowing about any possible obstacles!

14-08-2012, 18:34	#267
discobeaker Registered User Join Date: Jun 2008 Location: Monaghan/Dublin Posts: 786 Adverts \| Friends	Can someone explain to be what the episodes or relapses are??? I spoke to someone about it and he told me but he was in a rush so i didnt get the full meaning of it. He was saying something about his legs went numb and he couldnt walk. Do they vary or how do you know your having one??? Im a month away from my MRI scan so im just trying to get as much info as i can. This thread has been really helpful

14-08-2012, 20:04	#268
Mushaboom Registered User Join Date: Oct 2011 Location: Meath Posts: 48 Adverts \| Friends	@Val That sounds like a very daunting choice in front of you. If you feel it's not the right time, I wonder what would be wrong with trying a new treatment for a year or two before trying to conceive? At least you'll have a treament you're happy with to go back onto. But in saying that it's never a good time to have a baby so now is probably as good a time as any lol.

14-08-2012, 20:34	#269
Mushaboom Registered User Join Date: Oct 2011 Location: Meath Posts: 48 Adverts \| Friends	Hey Discobeaker, I'd advise you look on the MS Ireland website, shift MS is a great one too with you tube videos. It might be helpful in your research. Try not to stress out though, it's different for everyone. Mush

14-08-2012, 20:36	#270
discobeaker Registered User Join Date: Jun 2008 Location: Monaghan/Dublin Posts: 786 Adverts \| Friends	Thanks for that Musha. Im trying not to stress,the next month is going to drag by but im trying to stay busy and keep my mind off things. I must check out the You tube you mentioned. Thats alot of help. Thanks again