Guest guest Posted July 20, 2008 Report Share Posted July 20, 2008 I will have to go back over all my notes and see if anything else was mentioned. I can look through the handouts as well. I will also ask Mike if they talked about fibro in any of the sessions he went to. He went to a session on exercise and one on diet and maybe they talked more about it during those sessions. I certainly met a lot of people whose kids have been diagnosed with fibro. Does not seem like something readily diagnosed here. NO doctor has suggested this for Hannah. Her PT is going to do some of the trigger point testing on her in a couple of weeks. I'll let you know what happens. Beth & Hannah, 11, the mystery patient; asthma; gerd; migraines Sending prayers & happy thoughts, Beth Re: catching up Hi Beth, did they have much else to say about Fibro? Aundrea's pain is no longer isolated to her toe. She is having muscle and joint pain everywhere. Its been a bad flare and she has rated her pain level as a 9 or 10. She has just laid around all week. I guess I will give the doc a call on Monday. Apparently the increased dose in meds didn't help. Although the protonix for GERD does seem beneficial. Glad to hear you had a good time. I look forward to reading your other posts to hear more about your sessions etc. (Aundrea 12 fibro)- -- In @group s.com, Beth Yohnk <yohnkmom@.. .> wrote: > > Hi everyone: > I'm trying to catch up so I'm going to cheat a little and put most of it in one email: > > HELEN: I'm so sorry you have been having such a rough time lately. We missed meeting you at the conference. I hope you get things figured out quickly and start feeling like yourself again really soon. > > MARION: Please tell Miss Holly we hope all is going better for her. I hope her pain is better today and she is feeling better soon. We missed meeting you also at conference. > > SONIA: I'm truly bummed to hear Drea is struggling again. It certainly sounds like more than fibro going on. In one session they talked briefly about fibro and said there is never swelling with it. Gout does not seem likely either. Her toe would be very red as well as swollen. I hope she feels better quickly and can enjoy the rest of her summer. > > COLLEEN: thank you once again for an awesome conference! Both my kids had a blast. Jay is already emailing his new buddies! The dogs that they gave away are wonderful. Hannah is using both of them as we speak. She named one Arthur and the other one is Artie. Thanks for helping to make our first conference wonderful. > > LISA: Have fun at camp. Glad your appt went well, despite the creepy doc..LOL > > IZZIE: Sorry you are still struggling, but sounds like the new issue may be temporary, even though annoying. > > More on Hannah in another email. Hope everyone else is doing well! > > Sending prayers & happy thoughts, > Beth > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 21, 2010 Report Share Posted September 21, 2010 hey group...i don't post often but read all your posts. i am now a patient at the cleveland clinic. they truly care and have the rescources to do whatever is necessary. they manage my gleevec bone pain with a duragesic patch as well as a few tabs of vicodin a day. it has made such a difference in my quality of life. i can now truly appreciate and play with my grandkids. they are also replacing my teeth with permanant dental implants. my teeth were devastated by the stomach acid regurged with the n & v of gleevec. dr. coplan seems so attentive and the staff has customer service down to a T. if anyone from the area needs a doc....i highly suggest the cleveland clinic. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 21, 2010 Report Share Posted September 21, 2010 Hi, I'm glad you are receiving such great care at the Clinic. I go there also, but I go to the Rockside offices. I get labs done there weekly and only have to see my dr. once a year as I am in a clinical trial at the U of Mich and see Dr. Talpaz monthly,. Good luck, Bobby a ( Bobby ) Doyle, dob 12/17/29 DX 5/1995 Interferon 9 weeks/Hydroxyurea 5 years 02/2000 to 06/2002 Gleevec trial, OHSU 06/2002 Gleevec/Trisenox Trial, OHSU 06/2003 Gleevec/Zarnestra Trial, OHSU 04/2004 Sprycel Trial, MDACC, CCR in 10 months 04/2008 XL228 Trial, U of Mich. 01/2009 PCR 5.69 04/2009 Ariad Trial AP24534 09/2009 PCR 0.01 11/2009 PCR 0.034 02/2010 PCRU #840 Zavie's Zero Club From: mswerlein <mswerlein@...> Subject: [ ] catching up Date: Tuesday, September 21, 2010, 10:53 AM  hey group...i don't post often but read all your posts. i am now a patient at the cleveland clinic. they truly care and have the rescources to do whatever is necessary. they manage my gleevec bone pain with a duragesic patch as well as a few tabs of vicodin a day. it has made such a difference in my quality of life. i can now truly appreciate and play with my grandkids. they are also replacing my teeth with permanant dental implants. my teeth were devastated by the stomach acid regurged with the n & v of gleevec. dr. coplan seems so attentive and the staff has customer service down to a T. if anyone from the area needs a doc....i highly suggest the cleveland clinic. Quote Link to comment Share on other sites More sharing options...
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