How does one find a doctor that will listen?
- lasaluv
- Dan_Ellsworth
- Jausten
- Dan_Ellsworth
- Jausten
- Dan_Ellsworth
- ______MarcellaGM
- Dan_Ellsworth
- lasaluv
- ______MarcellaGM
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» Dan_Ellsworth - Not a problem. I wanted to help and you gave the clues. What I
Not a problem. I wanted to help and you gave the clues. What I did is a little fussy anyway, and a change of pace from other things I'm doing. If that G-stuff is useful (and apparently it takes a while to clear out the toxins) I hope word gets around any way it can.Dan Ellsworth (e-mail, bio), Editor, "Christianity - Protestant"
-- posted by Dan_Ellsworth
» Jausten - About Guaifenesin: Dr. St.Amand did a study with guaifenesin
About Guaifenesin:Dr. St.Amand did a study with guaifenesin in 1994. Dr. Devin Starlanyl has written about its use in her book that was published in 1996. After discussing this topic with Michelle Struik, Suite 101 Disability editor on the phone, she informed me that Dr. Rob Bennett did a study of Guaifenesin and found that it only had a placebo effect. I did try to find his study on his site, which is listed as one of my top 5, but couldn't find it. I do know that he is one of the top researchers in the United States along with Dr. Russell, and I will be attending Dr. Bennett's convention in Oregon this weekend.
My chronic pain specialist knows Dr. Bennett since he came to Vancouver, BC and discussed different treatments with her and several other doctors who work with patients who have FMS. He is currently doing a study with Dextromethorphan, which is a cough relief medication but it also has other properties such as being a NMDA receptor autogonist, whatever that means..*g..
My suggestion is to stick with the researchers such as Dr. Bennett and Dr. Russell, and my chronic pain specialist here in Vancouver agrees with their work. Dr. Starlanyl does have a lot of good information in her book and on her web site, but she is mostly dealing with myofascial pain syndrome. Dr. Nye is a neurologist who has a good understanding of FMS, and his approach is sound and scientifically based.
The important thing to remember is that a study is not a double blind experiment. A study can not give accurate results for scientific data because it has too many variables to deal with. It can be useful, but we all have to remember that people with FMS will try anything to feel better, and sometimes it wastes our time, money, and can even harm us.
Hopefully, I'll have a chance to find out where I can get a copy of Dr. Bennett's study on Guaifenesin, but I'd suggest that Barb follow what her doctor said. Guaifenesin is an old study, and following old studies which may have been disproved isn't wise to do. Also, Dr. Bennett would recommend it's use and so would Dr. Russell if it was a cure or caused a remission of symptoms. They are two of the top researchers in the US....or did I already state that?....Brain is tired from dealing with email...*g..
Cynthia
Jausten
Suite 101 Contributing Editor: Fibromyalgia
-- posted by Jausten
» Dan_Ellsworth - Cynthia, you raise a good point, in that the site I cited (Could
Cynthia, you raise a good point, in that the site I cited (Couldn't resist that.) features both diseases, which might have caused some confusion. I agree that "double blind" (Neither the test subjects nor those who administer the medicine know who's got the real thing.) is the most dependable thing. Even so, the "study" report proposed possible mechanisms, and reported specific side effects (weird urine) and improvements. I wonder if it's possible to maintain a placebo effect when such side effects occur. I think there might yet be something to find out here.However, it's a good point not to get everybody yelling for the stuff when we haven't got reproducible results. Your efforts to keep a balance are commendable. "Cynthia's Site, Sensible and Sympathetic. Share, Stay, Support." Ah, well, I'm not quitting my day job. ;-]
Dan Ellsworth (e-mail, bio), Editor, "Christianity - Protestant"
-- posted by Dan_Ellsworth
» Jausten - Dan, I think you've become a member of the unique and eccentr
Dan,I think you've become a member of the unique and eccentric club. Welcome..*LOL....but don't quit your day job..interesting that you used all "S's" in your words. Now I wonder what that means? My last name used to be Smith..is this some weird connection or what?..*g..
I'll ask Dr. Bennett at the convention about his study. Since my own specialist actually knows him, I'll just go up and introduce myself. I'll also tell him that I've been sending people to his site. Do you think he'll give me a real job?..*g..
About the study and the side effects of dark urine, etc, that doesn't mean that it actually worked. Try taking lots of Vitamin B and see what color your urine is..*g...Also, the placebo effect can be seen in people taking something and they do improve because their minds tell them that they are improving. Not a bad thing, but not a basis for a study. I'd take a placebo effect over no effect at all, but it doesn't prove that the drug actually works for the majority of people with fibromyalgia.
I'm off to get my stitches out, and then heading for Portland, Oregon with Michelle. And for those who haven't already heard, my breast biopsy was benign. So, I'll be around for awhile to maintain my unique and eccentric self..*g..
See you on Monday.
Cynthia
Jausten
Suite 101 Contributing Editor: Fibromyalgia
-- posted by Jausten
» Dan_Ellsworth - OK, "C", no potty proof. ;-) It's just that it was consistent w
OK, "C", no potty proof. ;-) It's just that it was consistent with the proposed mechanism. And ... I nearly said "congratulations on your breast" but that doesn't seem quite right ... so congratulations on your favorable medical finding. Let us know what happens.One thing I did get from the what's-her-name site is that 25% of her fibromyalgia patients are men. That might mean that men don't get it diagnosed as much, as she speculates. Or not.
Time for a lunch-hour, in-chair nap. [ ...zzzz...]
Dan Ellsworth (e-mail, bio), Editor, "Christianity - Protestant"
-- posted by Dan_Ellsworth
» ______MarcellaGM - Cynthia, glad to hear your biopsy was benign. Portland is just
Cynthia, glad to hear your biopsy was benign. Portland is just a hop and a skip from where I live in Eugene, Oregon. I hope you bring back lots of information to share.Daniel, It's true about B vits. and dark urine. Who is the woman you spoke about who has info. on Myofascial Pain? This and extreme tiredness seems to be what I am suffering from. Marcella
Pacific Northwest Garden
-- posted by ______MarcellaGM
» Dan_Ellsworth - Marcella, Dr. Devin Starlanyl as mentioned 10 notes up (10:17 Se
Marcella, Dr. Devin Starlanyl as mentioned 10 notes up (10:17 Sept. 17 from me) - the message with links in it.While we're mentioning B vitamins, is there one you can take in large quantities before camping to make you less attractive to mosquitoes? Or is that a Woodlands Legend? (Not Urban Legend, I would say.)
Dan Ellsworth (e-mail, bio), Editor, "Christianity - Protestant"
-- posted by Dan_Ellsworth
» lasaluv - Barb Takeda Just wanted to say to hi to all in this discussion
Barb TakedaJust wanted to say to hi to all in this discussion group. I'm having a horrible day, fatigue, that fluey feeling, all over pain and I have to be at work today. It's going to be a long day. I think today that the weather up here in Southern Ontario has alot to do with it, it's rather overcast, promises of rain, etc., etc.,
How is everyone else doing today??
Barb
-- posted by lasaluv
» ______MarcellaGM - Dan, Very embaressing after I read my note I realized you had s
Dan, Very embaressing after I read my note I realized you had said nothing about B vits. I guess it is just the brain -fog I have been reading about. It is a good thing my family and friends already think I am eccentric. They do not even see any difference in me as far as being absent mined.Barb, this is a big HI back to you. I wish I had something cheerful to say about the weather but just think how bleak the world would be without the grey days and the rain. Here where I live it rains all the time. I like to think it's good for my complection.
The news about my doctor when I told him what I thought I had was "I know." My reply was, "Why did'nt you tell me?" All he said was was , There is'nt anything that can be done about it." I went balistic. Marcella
Pacific Northwest Garden
-- posted by ______MarcellaGM
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