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ween
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Imove left a comment for ween
May 8
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March 30
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March 5

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More about me (my health interests and reasons for joining WEGO Health)
Im 40 years old,started getting sick sept.07. started with internal tremors, and headaches and that got the ball rolling. now iv been dia. with generalized dystonia, tremors and chorea. i have been all over for help UCSF, MAYO clinic in AZ. Will be heading to STANFORD on the 23rd of Dec. no answers to why this all happened in less than a year and I have no insurance. Its amazing what can happen to u pretty much over nite.

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At 7:24pm on May 8, 2009, Imove said…
Hi Tina!
It's so nice to be thought about - thank you. I'm doing ok. Can't tell that the Klonipin is doing anything much to calm down the spasms & twisting...I have a call in to the neuromuscular dr about it and I'm just waiting to hear.
How are YOU doing??
At 8:16pm on April 2, 2009, Imove said…
Tina, I was really glad to hear from you. I like staying in touch. My visit yesterday went really well. I ended up seeing a colleague of the specialist that I thought I was going to see, but it worked out great. The dr I saw is a woman in his group and she has tons of experience in neuro-muscular diseases. She's written several textbooks and professional papers on neuromuscular diseases and on NCT/EMG. She drew a huge amount of blood for all kinds of lab work and I'm scheduled to go back for an NCT/EMG on the 13th. She said she didn't want anyone else to do it but her. She was very thorough with her exam and her questions, and she is very personable too. I felt like I got to tell her everything I had wanted to. I believe that either she will get to the bottom of what's going on or that she will at least treat my symptoms...I don't feel she will let me walk away without helping me in some way. How old is your son that's been staying at the house? And thank God you have such a wonderful friend/room mate. I am glad you have some help and support. Please write only when you have strength, and I'll look forward to it.
White light wishes,
~Connie~
At 7:49pm on March 30, 2009, Imove said…
Oh, Tina, I'm so sorry to hear...I will keep you in my prayers.
I go to a specialist this Wednesday April 1st - a neurologist at Univ of Alabam at Birmingham - he is a neuromuscular specialist. I don't mind all the tests he will probably put me thru if he can tell me what's wrong. I'm having more and more spasms in different places and lots of muscle tightness too. I will let you know after the appt what they tell me.
You take care now...
later, Connie
At 6:11pm on March 29, 2009, Imove said…
Tiiiiinaaa, haven't heard from you lately --- how you be? I've had you on my mind again and just wonderin'...let me know....
~Connie~
At 7:18pm on March 5, 2009, Imove said…
Hi Tina! Really glad to hear from you. The MDS appt went ok I guess - mixed feelings on it. In spite of my symptoms, he doesn't think this is dystonia. He thinks I have a problem instead with the nerve cells getting the chemicals communicated to the muscle cells, and he also thinks I have RLS based on how low my ferritin level is. He put me on Mirapex for RLS, but the starting dose is so low right now that I can't tell any difference yet. He has referred me to a neuro colleague of his that specializes in EMG/NCT tests and in disorders with the channel between the nerve cells and muscle cells...that appt is April 1. I just want to get diagnosed and get some kind of relief. I guess I have mixed feelings because I never got the chance to tell him all my symptoms completely - he kept asking questions while I was trying to tell him everything, and then we'd get off track, and eventually my appt time was up. I took a DVD of the twisting to him - he didn't look at it while I was there but was really glad I'd brought it and promised to look at it and said he would hand deliver it himself to the other dr. Guess I'll find out more after I see this other dr.
How are you these days??
At 8:09pm on February 5, 2009, Imove said…
Hi Tina, I've had you on my mind again and I'm wondering how you are? Are things still progressing?
I FINALLY got my appt scheduled with a movement disorder specialist - I am so glad! It is on Feb 23rd.
Let me know how you're doing.
~Connie~
At 7:28pm on January 27, 2009, Imove said…
Hi there! I was glad to see your message waiting. I am SO glad to hear your got SS approved! That's awesome! You must be so relieved. I know that getting approved the first time around is uncommon. I'm doing ok, everything is the same...just waiting to hear back from my neurologist about a referral appointment to the movement disorder specialist he has referred me to. The wheels of progress sure do turn slowly. Please do stay in touch when you feel up to it. ~Connie~
At 8:48am on January 14, 2009, Imove said…
ween! that's so weird that you wrote me --- I've had you on my mind the last few days. I do that with certain friends. I think there is something about that, some type of mental connection that isn't understood (or even believed) yet. I don't know how you feel about that, but it happens to me too often for me to ignore it.
I'm ok - thanks for asking. I see my local neurologist next week and plan to ask him for a referral to a certain movement disorder specialist if he doesn't suggest it on his own. How about YOU? What is new and how are you??
At 6:31pm on December 28, 2008, Imove said…
Sure sorry to hear about your Stanford visit - I am sure it was disappointing. Some diseases continue to be ahead of medicine. It's awesome that they filmed you for research. My Christmas was great and full of memories - thanks for asking. I hope yours was equally as good.
Hang on and stay with us here.
~Connie~
At 9:50am on December 19, 2008, Imove said…
I'm so pleased to know your Stanford appt is just around the corner. Please let us know how it goes.
Sending the very best of thoughts to you,
~Connie~

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