As suggested in Lulu54's introduction thread, just here to introduce myself. Freshly diagnosed with MS a scant 48 hours ago. I did a bit of lurking on here for the 6 weeks I was determined to have Clinically Isolated Syndrome, but as I'm now "official" I'm outing myself. For more details on the surprise turn of events since November (never a hint of more than mono or chicken pox in my life), I have written a journal entry on my profile page.
I'm not sure how active I'll be as my current issue is visual (and happily I'm getting a lot of direct advice from consultants and MS nurse specialists), but as I'm in the "choose your disease modifying treatment" stage of the game, I may have a few direct questions in that area. I'm being treated at a research hospital, meaning I have a rather dizzying array of options. Baffling at the moment, but exciting too (science geek).
I'm not sure how many people are on here from outside the U.S. (pretty sure I saw a couple of mentions of the NHS), but I can offer a little European solidarity (Ireland, here) if called upon.
Well,hello, and welcome back to the forum.
I'm not glad that you have MS, but I am glad that they figured it all out for you. (Many have to wait years before they get diagnosed.)
I was diagnosed in July of 2010. And I started taking Copaxone in late September.
I have family in County Roscommon, including many, many, relatives that have passed on.
Thanks for the welcome! Copaxone is indeed one of my options (others being Rebif, Avonex, and Betaferon). Fingolimod doesn't yet have European approval (a likelihood in summer or spring). I'm not indicated for Tysabri at this facility as they reserve that treatment (in light of certain risks) for those who don't seem to respond to the interferons.
Interestingly, a study I could be up for would randomise (if that's a word) me to either Avonex or Daclizumab, the latter being similar(ish) to Tysabri in it's mechanism as I understand it. This would interest me as, at least here, it is not currently available outside of this phase II trial and thus far rates somewhere between the Tysabri and interferon relapse rate (It currently it stands at 50% reduction).
Copaxone was indicated to me as having a lower side-effect profile. If you don't mind me asking, has your experience born this out? Have you been to Roscommon yourself? But as I said, early days. I've a weekend of cheesy pharmaceutical company DVDs to get through...
The only side effects that I get with Copaxone are welts every time I inject and a little pain/stinging at the site for about 20 min or so. Sometimes they're worse than other days. Besides that, I don't have any other side effects. I'm not sure what the costs are for the other prescription options, but there's NO WAY I could afford Copaxone without insurance. It costs over $3,000 (US Dollars) a month.
I'd like to go to Ireland one day. My mom went a couple times before she died and my grandparents have been back maybe 20 times so far. I think I lost count. From their photos and of course the ones I've seen online, it looks very beautiful there.
Luckily in Ireland I won't be paying a cent for whichever medication I decide to go with (and that decision is left up to me, with advice made available from the Neurologist and MS Nurse Specialist). The HSE has a Long Term Illness Scheme and a Drugs Payment Scheme.
I have to say, I'd be dealing with a hell of a lot more worry if dealing with this new reality also involved potential financial meltdown!
Do you know that if your grandparents were born here, you qualify to become a citizen yourself? http://www.citizensinformation.ie/en/moving_country/irish_citizenship/irish_citizenship_through_birth_or_descent.html#l1f4da Unfortunately, I'm a couple of years away from naturalisation. Not a drop of Irish blood in me, just went to university here and later wound up rather in love with a local!
Thanks for the first hand information. It's muchly appreciated.
I am sorry to hear that you got the dx but I am glad you found this community where there are so many people here willing to help and be of assistance.
As for the eye issues you are having, if it helps at all you can type in all CAPS and we will return the favor when we respond to your posts. Not sure if that will help you alot but it is an option.
I got dx'd (sort of) in September 2010, doc is sure I have it but insurance won't cover the DMD's until there is more proof. I have heard a lot of good things about all the DMD's, copaxone is a big one around here.
My sister is on Avonex and has been for 8 years and hasn't had a major relapse since she started it so when I get to take a DMD I will probably try that route first to see if I am as lucky as she is with it.
I hope you figure out your DMD soon and you start it and feel much better after.
Welcome to our support forum---but of course sorry to hear of your recent diagnosis.
We have many people from the U.K. and I'm sure they will chime in. I'm not on any DMD's so I can't help you there. It's wonderful that you don't have to worry about paying for your scripts there though.
Hi, and welcome! I'm sure, since you've been lurking, you've seen the Health Pages (yellow icon, upper right). I've been hanging out here for a couple of years, and I still refer to them!
So sorry you have this rotten diagnosis! It took me awhile to wrap my mind around this, but now I'm just determined to LIVE, d@mn it! If I overdo it one day, I may have to pay for it for a few days afterward, but most of the time it was worth it :)
Thanks for the welcome, ladies! Well, it is a lot to wrap my head around, and I'm sure there will be ups and downs, but luckily not feeling too overwhelmed for the time being. RE: the all caps, what I'm doing for the time being is just zooming in on the entire screen (cmd+ on a Mac) and that's helping a lot. But thanks for the consideration!
Just finished up a round of methylprednisolone and I responded well before, so hopefully the left eye will decide to start pulling her weight again soon! Paula, thank you for the medication input. Trying to find that balance now of relationally informing myself of my DMD options mixed with the feeling of "GET ON SOMETHING ASAP!"
And Lisa, I think I'm in your camp with regard to outlook. I guess time will tell what my limits are or how the "live vs. pay-for-it ratio" pans out. But I'm not writing anything off just yet!
Red, thank you for the welcome and the info on some of the international make up on here!
Howdy Howdy Howdy from Texas.
The good thing is you have an answer, that can be the hardest part of the journey sometimes. Looking at your pictures it looks like you had a pretty positive attitude when you got your LP. That is awesome, Use that strength and take it day by day.
Cheers, Lora! I've had my down moments too, but try to keep them in their place.
Absolutely: looking around I realise how fortunate I am to be able to swiftly get a diagnosis and get moving on this. I think the frustration would bother me as much as the possibility of disease if there seemed to be no answers or a lot of foot-dragging.
hello fellow european:-) am one of the NHS sufferers (and by that, i DO mean suffering the NHS!) Luckily i work for them, so was diagnosed in september thanks to a doctor friend on my ward, or i would be in limbo land..or blissfully unaware??.....depending on how i am feeling! Have also had eye problems, and a few odd things over the years. Right now i am waiting on my first copaxone delivery so i will keep you posted on how it goes if u like? Declined the interferons on the basis that they make you feel ill and miserable! god knows am struggling to see the bright side at the moment anyway,so,er....no, thanks! x
Hey there! I'm a HSE kid here. Really beginning to realise how much I've lucked out as far as resources, ease of diagnosis, location of the hospital, etc. Having doctor friends is handy indeed (a friend of mine had interned at the hospital I wound up in with my first symptoms. Good to have someone who knows the way around when you can't see!)
Would love to hear how you get on with your Copaxone. If I'm to do this study (Avonex vs. daclizumab), I've a 50 day wait in view of the methylprednisolone I just took, so I've a bit of time to make my decision. All the best!
hello again :-) just updating u on the copaxone..is all fine. was expecting pain like the swine flu jab but was much better. The ms nurse showed me how to use the autoject (hides the needle!) and is really easy. talking to other people it looks like maybe everyone has a different experience, but personally am finding it ok, stings a bit after the jab but not what i would call 'ow!'pain. Here's hoping fingolimod breezes through NICE...but until then, am doing ok with the copaxone :-) good luck and all the best.x
Welcome, welcome! You sound good w/your dx. If I'm reading you right, good for you.
I'm on Rebif and we have a slew of other folks on the gammit of DMDs, and even those who have been on the oral, Gilenya. Ask away when your ready -- we can even bump a few older discussions on it if you like.
Nice to have you with us, and I'm sure many of our members will hit you up on your offer ref. the NHS, etc.
See you around. Hope you get some relief w/your vision.
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