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-   -   It's official (again). I'm diseased! (https://www.neurotalk.org/multiple-sclerosis/62653-official-im-diseased.html)

Gazelle 12-04-2008 06:26 AM

Quote:

Originally Posted by CayoKay (Post 419041)
hey, can you take the Fingolimod in ADDITION to the Cop?

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

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

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:

hollym 12-04-2008 08:53 AM

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......

azoyizes 12-04-2008 11:24 AM

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:

ewizabeth 12-04-2008 11:32 AM

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.

SandyC 12-04-2008 11:55 AM

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!

Gazelle 12-04-2008 04:46 PM

Quote:

Originally Posted by hollym (Post 419314)
It is abnormal for normal people and abnormal for MS. So many holes, but no pegs to fit in......

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

Quote:

Originally Posted by azoyizes (Post 419383)
I'm excited for you. :Excited:

Quote:

Originally Posted by SandyC (Post 419399)
I am excited about that oral medication. Whoohoo! You go Gaz!

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


Quote:

Originally Posted by ewizabeth (Post 419389)
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.

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

tovaxin_lab_rat 12-04-2008 05:03 PM

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

dmplaura 12-04-2008 07:38 PM

Quote:

Originally Posted by Gazelle (Post 419275)
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

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

CayoKay 12-04-2008 07:56 PM

Quote:

Originally Posted by hollym (Post 419314)
BTW, my brain is definitely the one labeled "Abby Normal"

: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:

CayoKay 12-04-2008 08:11 PM

Quote:

Originally Posted by Gazelle (Post 419275)
Cop1, huh? I'm thinking that doesn't make you OLD, it just makes you aware of stuff to deal with this disease longer! ;)

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 CopaxoneŽ, 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.


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