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Old 07-26-2008, 11:40 PM #11
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congrats on having an answer, Dj, kind of an oxy moron statement i am still not sure how to approach this congradulating someone for having MS but at least the doubts and not knowing are gone, sometimes that limbo and or being miss DXed can be worse, suspended animation,

Glad you got an answer and the C seems to be working, oh and if DM shows you the secret handshake make sure she cleans the pixie stuff off her hand
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Old 07-26-2008, 11:52 PM #12
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Glad to hear you have a dx, congratulations it's MS? Or not.

Knowledge is power. So glad the Copax is working for you. Please continue your path to stabilization.

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Old 07-27-2008, 01:25 AM #13
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Glad to hear it's not primary sjogerns and you were on the right track all along. I've been praying for you. I hope you get some symptom relief for all your "dryness"
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Old 07-27-2008, 01:40 AM #14
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This is a hard one.....congratulations or commisserations....what does one say?

I'm sure you're glad to have a diagnosis even though it's probably not the best one you could have hoped for.

One good thing though.....you already have the bestest support group ever!
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Old 07-27-2008, 02:03 AM #15
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I'm happy to hear you finally have a DX, and I am very happy to hear you only have 2 new enhanced lesions. That is great - lets hope for no new ones with copaxone on the next one. It does look to be wking.

I am so very sad that you had to get stuck with the MS DX. It is not an easy one to deal with, but you seem very strong and I think will be able to deal.

You know there is tons of support for you here, and in many other places. Just call out and we will all be there for you.
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Old 07-27-2008, 02:48 AM #16
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I am glad that you finally some answers. I know I would have been really upset if I was told that I had been injecting copaxone for nothing. I hope that it continue to work for you -- even better than it is right now. I guess I am a bit surprised that the doctor is satisfied with copaxone given you have 4 new lesions.
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Old 07-27-2008, 07:44 AM #17
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yes, I was near the tornado, but we are high and dry at my house. LOTS of devestating things surrounding us. People died in their homes, and some had to be rescued from their collapsed houses! The roads are still littered with trees and debris, and its awful around here! we have had rain, rain and more rain, day after day. wild stuff.

If any of you were following my story, I have been dx with MS since 06. I went to an MS center, and found amazing MDs. for the last few months my eyes have become EXTREMELY dry! and an eye surgeon who gave me eye plugs suggested sjogrens. Did the blood work, and it was negative. Saw a rheumy MD and she was dancing in the streets claiming that I had been mis diagnosed and MS was not what was wrong with me, and that I have been shooting all these drugs for years and its not gonna work, or help me, and my MS center should have never dx with me MS, and she wanted to put me immediatly IN the hospital for 5 days of methotrexate and IVSM and then put me on oral methotrexate and it was a whirlwind of confusion and frustration. I was ANGRY to thinK I was mis diagnosed by a major medical center, and had been mislead!

The MS center did a FULL review of ALL of my past medical history back 15 years, and then the big dog himself called me to reassure me that this over zealous MD was OUT OF LINE! That she had NO clinical evidence, other than my dry eyes, and even in the face of substancial medical evidence she was OUT OF LINE to tell me i had been mis diagnosed with MS and actually had SJS BEFORE fiinishing her investigation, and pulling up old records, reveiwing MRIs and including the team that worked so hard to dx me in the first place. He told me that others who have come to them with a dx of MS have had it removed by them, but they are VERY VERY VERY careful to be thourough in the diagnostic critera used to dx a patient in the first place.

So while my post says I have MS, the story is that I have had it for a couple of years now, and its a long drawn out story of another sub specialty trying to drag me off a path that I was placed on with great care, and detailed testing before they dropped me off here.

So, thanks to all for the great support and cheerleading. you really helped me get over that hump.
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Old 07-27-2008, 07:53 AM #18
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I don't know why there isn't more cooperation among specialists in different fields, instead of competition. I seem to hear this with Lyme, Fribro, and MS especially. I have a friend who is a basket case because of the tug-of-war among three of her docs.

Will you be "following up" with the gung ho doc?

Glad to hear the wild weather bypassed you. I have friends in Epsom, nearly fell out of my chair when I heard that town named in conjunction with a tornado!
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Old 07-27-2008, 08:05 AM #19
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actually I will be following up with her because I think I have developed RA in my ankle on that drop foot, and if I have secondary sjs, then i will want someone in my corner. She was VERY nice, very sweet, and well...she is VERY young! she is new at this being on her own stuff. Actually she is part of the hosptials program, and I am sure that my MS center will get the hospital involved. I am sure she is going to take a beating over this.

Was she over zealous...yep! Was she out of line? yep! I think it was just a case of being the new girl in the new circle or the new city and finding a patient who has so many things wrong with her, that you so badly want to fix, and her specialty could explain so many things....you get the idea.

I will give her a chance to explain herself next visit. Maybe she will be a jerk, and maybe she wont wont want to forgive herself, or maybe she will be insisant that she is right....I will give her the chance to explain herself. she hasnt called me yet, so I assume I still have a follow up appointment.
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Old 07-27-2008, 08:08 AM #20
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Wow Dej, I wasn't aware that a tornado devastated your region. I'm glad you made out ok, but I can imagine that is a tough time for you, the family and everyone around.
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10/2011 - Relapse - Optic Neuritis developed
9/2012 - Relapse - Balance issues 1 sided
8/2012 - Erythema Nodosum - diagnosed 10/2012, reaction to Topiramate (Topamax)
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