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14 comments:
Hi, Callie! I got your emai and "drove" over here to your blog as soon as I could.
I'm so sorry to read you have only recently been diagnosed...I remember those early times and yes...EVERYONE else in the medical profession did NOT seem to take my MS as seriously as I did!
You will find there is excellent and knowledgeable support online in the MS community and many MS bloggers out here...I've got a link to 100 of them on my blog (and when I get a free moment, will add yours and change it to 101!). It's a great forum to ask questions, but always keep in mine, it is an INDIVIDUAL disease (read your comment about 1 year and being in a wheel chair) and no two of us are alike.
I am also an RN by training (but I work in Mental Health, so I'm not a "real" nurse..LOL) and found out there was a whole lot I didn't know about MS until I was diagnosed. You'll become your own expert in time...
Hang in there and don't be afraid to ask any of us questions...
Linda D. in Seattle/AKA BrainCheese
HI Callie~
I would take your poll but I don't fall under any of those categories with my ms. Nice to see a new face in blogger world. I LOVE your house.
Sharon
Thanks, guys for the comments....Sharon, tell me what you do fall under, if you want.
Braincheese, I'll get your link up a little later today. Thanks!
Good to meet you Callie. I came by way of MsCheese's introduction. Sorry about your diagnosis, but glad you found us.
I am just now 50 (I think that's the first time I've typed that outloud! LOL) I started seeing a neuro in 2001 with weird assorted symptoms. I had lesions but they somehow weren't the normal presentation. (as if a lesion in your brain could be normal)My subsequent LP's showed extremely high white cell counts but none of the MS markers they were looking for. After nearly 4 years in limbo,2 major university specialists, more testing, and increasing symptoms, I was finally diagnosed. After they ruled out every horrible disease , hearing I had MS was actually good news at that point. I've been on copaxone and now rebiff. I get by with a cane, but for long walks with my dog I push a doggy stroller.I need the extra balance. (empty while he walks)
I've had flares where I could not walk at all, it's scary, but it does subside and you return back to your old normal.
But remember, EVERYONE is different. I know a woman who was dx'd 15 years ago, and hasn't had a relapse, still works and never needed a cane.
PING.... mdmhvonpa signing in ... AKA ... ummm, mdmhvonpa?
Linda told us to visit and we ALL DO what the queen says.
Hi Callie, welcome to the online-MS-blogging world! I'm sure this is a "club" you'd prefer NOT to belong to but as it is, you'll find a lot of support from the various MS folks on the web. :) As Linda says, no two of us have the same experience with MS. It's hard at first to know what drugs to try and what approach to take - but the more you do the more information you'll have. Just try to be patient with yourself and remember to take care of yourself first!
I'm 32 and was diagnosed June 23, 2006, so am in a similar boat as you. I was on Avonex for about a year and the side effects made it impossible for me to stay on it. Now on Copaxone and the difference between the drug companies alone is worth the switch. (I got ZERO calls and no help from the Avonex people; the Copaxone people have been lovely.)
Good luck! You can find me at: http://www.rathnait.net/blog
~Zee
Thanks again all for visiting and your advice. I am freaked about the side affects of Avonex, but I'll guess we'll see because I actually haven't started it yet.
Hi Callie! Sorry to hear that our MS "club" has claimed you as a member. Hopefully we can all be of help to each other.
Hi Callie:
Found you via BrainCheese. Welcome to blogging.
You'll find many of us have different symptoms and the same symptoms - no two people experience exactly the same symptoms.
Hopefully you have gotten 2nd opinions and while this world of MS is new to you - we are all nice people and we don't bite! LOL
We ask each other questions, we ask how each other feels, commiserate and celebrate.
There is also a website called PatientsLikeMe.com where you can meet lots of MSer's newly diagnosed and others who have had MS as long as 30 plus years. Lots of info there.
Not all of us choose to go on CRAB (Copaxone, Rebif, Avonex, Betaseron) drugs; some of us choose to manage our MS with diet and supplements (like me). It is a "choice" and your right to choose.
So welcome. Stop by and say hello.
Anne
http://disablednotdead-anne.blogspot.com
Yo Callie,
I've had MS since I was 16. That was a l-o-n-g time ago. I am now 53 years old.
Hope that helps give you some perspective on this admittedly crummy disease.
If you'd like some entertainment on your iPod, (if you've got one of course, :-) you might want to try my MS & music show at MSBPodcast
I see Anne told you about Patients like me. It is a great site. The people there are so nice. Some a bit crazy and funny, just when you need it. Check it out. As far as my symptoms I would say weakness is my biggest one. Right now I am battling with memory loss and vision problems but that is only temporary, I hope.
Found you via BrainCheese! Welcome to the Club none of us want to belong to.
I was diagnosed two years ago. I remember thinking the 'wheelchair' issue would be the worse thing in my life. As time goes by and I've read other blogs I've learned that's not true.
Oh- I had a hard time answering your poll. I use a cane sometimes, and other times I don't. MS is like that.
Nice to "meet" you!
Hi Callie! Welcome to the club, I'm sorry to say.
Joan
www.shortinthecord.blogspot.com
Hi, Callie, catching up on your posts, I'm new to blogging, but not to MS. Pick-up hit me at age 10, symptoms started soon after, came/went, but my thinking slowed down. DX 1990 (MRI came to my city) during that year was legally blind, drop foot, numb half of body--all went away by 1993--never to return(yet),walked to work,40+ hrs/wk,only used cane occasionally until 1999--started using scooter a lot, went on Copaxone, attacks subsided but damage remained. Now at age 50 I can not walk, use power chair,retired on disability in 2004, but I'm ok. You have loved ones, so do I, love and be loved, keep your sense of humor tuned, and lots of research happening,you will do fine. And look at all the new friends you've made. They are a great bunch. Diane-
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