It's official (again). I'm diseased!
 

This doc was great. He listened, was very personable, had a sense of humor, explained things well, and felt that without a doubt it was MS. So I have my dx back. (and he laughed when I told him at the end of the visit that I was afraid that I was going to go down there and end up with him telling me I had a hang nail)

I'm diseased officially (again)!!!!! :yahoo::yahoo::yahoo:
(hmm.... maybe the excited people emoticons are kind of strange considering what I'm happy about)

OH..... and I can sign up for a clinical trial with oral medication Fingolimod (FTY720)!
http://clinicaltrials.gov/ct2/show/N...US%3APA&rank=4


http://www.msclinicaltrials.com/index.html

I'm going to talk to the study coordinator. I'd been on Copaxone since 2005 when I got my dx from my second neuro (Dr. Flip Flop's partner). But the chance to try an oral medication, even knowing that it could turn out to be a placebo, is worth a shot (pun intended) as an alternative to daily injections which I hate.

Off to see about getting a "baseline" MRI done for him.

WooHoo!! Congratulations on getting your disease back!

:holysheep: That just seemed soooo wrong :eek:

Well at least you fit in quite nicely here :p

Ahhhh, so the cape and staff worked huh? :D

Very big congratulations on finding your disease again! :hug:

LOL Yeah, it does, LeeAnn. Sort of like saying, "Congratulations! I'm so glad you are disabled enough to get your disability benefits." Huh??



He was deeply impressed with the cape, but I think the staff, which had a Gandalf head on it which, when tapped, emitted halogen bright beams of light and little sparkly bits floating in the beams probably did it. :p



As long as this doc doesn't leave the facility or stop treating MS patients, I'm going to stick with him.

Congratulations.....I think. What's the proper etiquette for congratulating someone on their disease? :D Just kidding.....I know you're glad to finally have someone agree with what you already knew.

These doctors could learn a lot from us if they would just listen! :rolleyes:

if only I could get my Gandalf to do THAT !!

he just makes noise:


honk honk, WHEEEEEEEEEEE!! honk honk, WHEEEEEEEEEE !!

hey, can you take the Fingolimod in ADDITION to the Cop?

hey, I'm so old I remember when it was called Cop1.

to differentiate it from Cop2 and Cop3, other versions of Glatiramer Acetate they were trying out in the clinical trials back in '94 and '95.

so, "At Ease! Stotty!"

don't be un-easy, your dis-ease is in fine form, and we're here to celebrate the resurgence of your diseasement.

:grouphug:

YIPPPEEEE!!! I am so glad the 3rd time was a charm. I am also glad you liked the dr and he had a sense of humor.

So.... I hope you didn't cause him Optic Neuritis or something. :holysheep:

Happy to hear that the 3rd time WAS the charm Gazelle! Great to hear, and it is SO refreshing to get a doc that actually LISTENS and makes you feel GOOD when you leave the office, it helps us SO much more when we know our docs are like that.........This disease is just TOO crazy and we really NEED that in a doctor.........

I am happy that you have finally found your guy.........:)


Joe

Well I'm glad you finally have someone who is willing to put a label to it so you can at least start fighting the battle. Sorry to hear it's MS for sure though. :hug:

Cherie

Not sure that you can. I don't know much about it yet because I haven't spoken to the study coordinator. I'll know more once I do.

Cop1, huh? I'm thinking that doesn't make you OLD, it just makes you aware of stuff to deal with this disease longer! ;)


HK, Yeah, I wish more docs would actually HEAR what their patients are saying rather than listening only to what they want to hear. It would make everyone's life better.

Tkrik, it's a good feeling! :D It is so hard to get a doc where you feel comfortable with the relationship. I worked with too many docs in the hospital and have switched all my physicians to ones who have maintained their humanity.

Dimpled One, he must have been used to things like that because he pulled out a pair of dark glasses, never missed a stride, and kept asking questions. He's GOOD! :D

JoeMac, you are so right about that. I know I need humans with feelings and personalities as docs. He made me laugh when I explained why I didn't report increases in sx or new sx to my former docs unless they'd lasted for more than a week or two. I told him "I'm not a whiner." He looked at me and said drolly, "Good, then you can be my patient." And gave me a BIG smile. My kind of guy! :highfive:

Cherie, thanks. It's a relief to finally have two docs agree, even if it IS 3 years apart. That part was just so frustrating to me.

I guess the best part is that this isn't a devastating discovery for me because I have been dealing with the likelihood that it was MS since 2003. And the dx in 2005 gave me mixed emotions even though I'd adjusted to the probability. This time, I just wanted to jump off the exam table and do a victory dance and spike a stethoscope! Life's crazy.

Thanks for "celebrating" with me! :grouphug:

I understand totally, Gazelle. I think I would do the victory dance for sure at this point if my neuro would firm things up for me. Unfortunately, having obvious brain damage and many white spots doesn't count if they aren't "typical".

BTW, my brain is definitely the one labeled "Abby Normal". It is abnormal for normal people and abnormal for MS. So many holes, but no pegs to fit in......

Way to go! I'm glad you have a good, smart, doc with a sense of humor. :D

Good luck with the oral med. :Good-Luck:

I'm excited for you. :Excited:

Glad you found a sensible doctor... You have to wonder, do the other doctors that try to change the diagnosis do it so they can order a bunch of tests to "look for other problems"? :rolleyes:

Once I sort of hinted to my neuro that maybe I didn't have MS and you should have seen his expression... :Noooo: like he's thinking, oh, you definitely have MS.

Sorry you got the dx again but glad you don't have to fight anymore either.

I am excited about that oral medication. Whoohoo! You go Gaz!

Ya want this guy's name? It'd give you an excuse to maybe come visit! :D

Thanks, I am too in a weird sort of way!


Wiz, I know. Those things had been ruled out before. And when I went to the rheumatologist less than a month ago he ordered a lot of the same "rule out" tests AGAIN! Ugh... what, he didn't BELIEVE the tests from earlier this year? Sometimes you just throw your hands up in the air in frustration and submit because you know there's no other way out.


Oh boy.... that must have been a Kodak moment! Well, when you're stuck with the dx I guess you're stuck. :rolleyes: At least he didn't give you the impression you needed a psych eval. Hey, there's a bonus behind MANY things in life if you only look. :D

gazzie is buying maker's mark for everyone! :D

Next time, pew pew him with magic missiles ;)!

:D

DD-then-11 called me Abby for a YEAR after my first flare.

Dr. Frederick Frankenstein: Igor, would you mind telling me whose brain I did put in?
Igor: And you won't be angry?
Dr. Frederick Frankenstein: I will NOT be angry.
Igor: Abby someone.
Dr. Frederick Frankenstein: Abby someone. Abby who?
Igor: Abby Normal.
Dr. Frederick Frankenstein: Abby Normal?
Igor: I'm almost sure that was the name.

Holly, thanks for reminding me of that joyous nickname !!

:D

welcome (back) to the Abby-Club, Gaz !!

:cool:

yep:

The original researchers named it Copolymer 1, the "1" indicating that it was the result of their first copolymerization reaction. Until 1996, the drug went through life as Copolymer 1, often shortened to Cop 1. Those familiar with the full name pronounced Cop as "cope"; others pronounced it as if talking about a police officer.

Teva, the firm which carried out the final steps of development of Cop 1 and filed a New Drug Application (NDA) for it, chose the trade name Copaxone®, which cleverly incorporated "Cop" and "one", as well as including the word "axon" as a reference to the nervous system and the place at which the drug produces its beneficial action.

http://molinterv.aspetjournals.org/c...ent/full/4/1/6

I remember first hearing about Cop1 at a Sacramento MS Society seminar in 1992.

Good plan, but that won't make him change the dx, right? :confused::eek::p


Cayo, I LOVE that movie. LOL See, I was so happy when I had my first MRI because I then had medically documented evidence that I had a brain and that it was normal (despite what some of my friends said).

Igor: Walk this way. (that's my FAVORITE line I think)

Frankenstein: You must be Igor.
Igor: No, it's pronounced "eye-gor."
Frankenstein: But they told me it was "ee-gor."
Igor: Well, they were wrong then, weren't they?

Berri berri interesting. Wow, I learn something new from you all the time!

For me, it'd be Cop as in Police Officer. My mom worked for the police department from when I was 13 to 18. Imagine having 165 dads with supremely dirty minds and bizarre senses of humor! And you wonder why I'm warped. :rolleyes:

I should hope not! Maybe he'll hook you up with some good stuff though, if you know what I mean. :winky:

Congratulations? Gazzy!

Glad you like your doc -- he sounds like a keeper.

Ummm, you SURE you want MS? I mean, you know about the initiation ceremony, right?

Hmmm, Twink, I think I might. I hazily (pun intended) remember something about one that I went through in 2005. Do you have to go through it again if you lose the dx and then get re-dx'd? Is it like Plebe week?

Look, MS sounds a lot nicer than ALS or GB or MG or CA. So.... sure, I'll take MS. Besides, I like the club benefits.

Nah, we won't make you go through it again.

You're right about Club benefits, though. Love meeting other MSers.

So, you're going to plan a GTG now, right?

Maybe you have WAY too many frequent flier miles. :D

Sure, I think the next one I'm going to plan will be in Italy with Greta. So who's joining me?

:p

Well CG I always knew you had holes in your head!


:welcome_sign:

Air Head Club

Gaz,
Glad you got confirmation,but wished for you that it woulda been something curable still. :hug: Bet you're glad though for the confirmation. I enjoy your posts always, just wanted you to know.

Gazelle,

Yeah, this is weird congratulating you on a disease. So I'll congratulate you on finding out you're not crazy. There really ARE holes in your head! LOL!

Glad you found a good doctor finally.

Now you can sit back, relax and take all these drugs they like giving us :D

:hug:
Kim

Well Gazling!

Glad to hear you have an explanation for all the holes in your head and that you caught a good doc! It makes all the difference in the world when dealing with this carp!

Now get back to work!

You guys are too funny!

I've got an MRI scheduled for the week of Christmas on a 3 T MRI machine. It'll be interesting to see THAT report and what, if anything, the neuro has to say about it.

Did receive an e-mail from him yesterday, which was really nice. :winner_first_h4h: I definitely have a winner here!

But, but..... Kim, I kinda LIKE the "I love me" jackets. They're haute couture! :rolleyes:

welcome back to a fellow Ms'er sorry I got a lisp:rolleyes:

even though its a double edged sword its a freedom of worries and wondering,

Thankth Frank, it'th nith to know I've got friendth. You're thomthing thpethial! :hug:

lol .................

Can't help but think of Gee Officer Krupke from West Side Story when I see the word "disease."

(Pssst: Good thing you have MS and not a social disease ... or then you'd have to see a social worker). ;)

It all makes sense when you watch the video: http://www.youtube.com/watch?v=VVwT-IkxS8k Just over 4 min. long.

I love that movie! That's a great scene. But someone really put some work into it! GREAT additions. Oliver was just a brilliant addition to it.

Great..... now I'm going to have that and "When you're a Jet...." in my head all day today.

I'm going to be tired with Gaztastic today.

Cruddy weather to go with cruddy disease!!

Here, too, DimpledOne. It was raining all day--dark and overcast. Sort of a "curl up with a good book or a movie" day. Wish I could have. It's hard to be at work when it's like that!

I saw WSS on the New York Stage, in 1957, with Carol Lawrence as Maria. I was 16 years old.:cool: I have the sound track from the stage.....much better singing.