Multiple Sclerosis (MS) Support Group

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AusSue 06/21/2011

Hi, A couple of queries at once
I have been booked in to have Botox injection in the eye due to constant eye flickering & closing, loss of vision that has been going on since early May. Would like to hear from anyone who has had had Botox injections. Are they painful, will it be numbed/will I be able to see after. Any ideas on how long it will be effective for & any other advice at all.
I am booked in for having it on 1st August & don't see the eye clinic till later in the month.

My other question is Gilenya has been approved in Australia to go on our subsidised pharmaceuticals later this year, think September.
Would love to hear anyone's experiences on it & what they have found. We have been hoping it will be approved so will be approaching neurologist at next visit in September.

I am really struggling since last flare up in May & have not recovered fully. Left side is very weak, got the shakes lots & vision is still bad too.

Thanks in advance

deleted_user 06/21/2011

hi! i dont know about the botox- but this is 3rd month on gilenya, doing ok. i take it at night, cause it made me a little sick at stomach. had to go to eye dr-they look for macular edema- guess i was ok- and a blood test. you take first pill at hospital-your blood pressure could go down to low with first dose- but i was fine.i dont know for how long i have got to ask- but after 3 months they want another blood test and get my eyes checked. hope i helped some!! hugs tickey

chicagogrl 06/21/2011

More on Gilenya:

http://www.dailystrength.org/c/Multiple_Sclerosis_MS/forum/11442417-gilenya

Hope this helps!

deleted_user 06/21/2011

I have been on Gilenya for a little over 2 months. Although it is nice to not to be doing injections it is not so easy to deal with. The doctor told me that all of my symptoms should subside after 2 months but they haven't gotten much easier. I will continue to stay on it in hopes that my body just needs more time to adjust. I have to get a blood test every month for the first 6 months. My lymphocyte counts have been dropping (as is usual on the medicine) and I have been needing to test every 2 weeks. I have dizziness and extreme fatigue. with my lowered count the fatigue is expected. I have read a lot of blogs where people had great experiences with gilenya though so i just wish you good luck!

deleted_user 06/21/2011

I have been getting Botox injections into my arm to try to open my hand up, it is severely contracted thanks to a mega cervical lesion. The injections aren't that bad really they didn't bother me, a pinch a first but they didn't burn me and my dr said she has never heard of her patients complain of reactions. The most you can get is every three months because your body builds up a tolerance to it. Also make sure you check about insurance, mine covered it but wanted to hear specific details from my dr to know it wasn't just cosmetic. It really does work but takes a bit of time to kick in. Good luck!!

deleted_user 06/22/2011

My question is where exactly "in the eye" are you instructed to get these injections?...By the corner of your eye, in your eyebrow, in-between your eyebrow, in your eyelid or in your eyeball specifically?...

If it's in your eyelid or in your eyeball, I could see how there could be major complications & permanent vision loss (i.e...blindness) which isn't a good thing at all.

Sounds scary to me to get a needle in your eyeball or eyelid...YUCK & OUCH & watch out for the health of your eye overall my friend. I'm looking out for you. No pun intended.

Take care,
Stay sane!

nes78 06/22/2011

i have cervical dystonia which must be due to my ms. my neck is so stiff it's like a tree trunk. about a month ago i had botox. they did about 6 injections in my neck. it didn't hurt too much and while injecting they were doing electric stim too. honestly i don't know if it worked. i do hope it works for your eye!

Malvina 06/23/2011

It is my understanding that Gilenya's main scary side effect is that it can unleash Herpies virus (normally dormant in our bodys). And when that happens this very powerful virus can kill us by attacking the liver. Also because it's relatively new on the market they might just not know all the pitfalls just yet. So I would definitely stay away from it for now (or hopefully forever;). I think Botox in itself is a fantastic invention and can very much help to relax those twitching muscles so if you trust your doctors and they have done it many times before I honestly would've not thought twice about it and went along with the op. Hope all goes well and you will share a very happy outcome experience with us soon. ;0)X

AusSue 06/23/2011

Thanks for all your replies & sharing your various experiences.
It does help me to know more about the different experiences others have had too.
I appreciate the information too. If any others have more please continue to add for me.
Thanks everyone.

deleted_user 06/24/2011

Hi sue My doctor said although Gilenya is not yet covered by PBS as yet he has people starting on it and the drug company is picking up the cost until it is approved in Australia. In fact the day I went they had their first person starting as they were in the clinic being observed for the six hours. Who did you see as I saw your in Melbourne
Michele

AusSue 06/25/2011

Hi Michelle, I go to royal Melb & see John King. Who are you seeing & where? I wont know any more till I see him in September anyway.
Hope to be well armed with information when I go to him.

Really appreciating the info on here too.

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