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Clinical Information or Fishbowl?
Polymyalgia Rheumatica (PMR) | Last Active: Apr 30 2:14pm | Replies (20)Comment receiving replies
@stevieb, good questions. Mayo Clinic Connect is an online community, connecting patients and family caregivers with each other. You do not have to be a Mayo Clinic patient or caregiver to join the conversations. Community members share experiences, ask questions, find answers, give and get support and exchange vital information. Mayo Clinic values patient and caregiver knowledge and recognizes you as experts by experience.
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@dadcue, I agree. Personal experiences shared do not substitute for professional medical advice. And members should never disregard professional medical advice or delay in seeking it because of something they have read on the community.
That said, doctors, researchers, nurses, educators, health designers and many people who work at Mayo Clinic learn a lot from members at Mayo Clinic Connect. Steve, the fishbowl analogy is a good one. But we don't use the information shared by members without their permission. Some of my favorite spin off initiatives from Connect have been the special projects members have participated in with Mayo Clinic, such as offered tips for education for other patients, invited to take part in research, featured in patient stories, or given feedback on the design of patient education websites and more.
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Replies to "@stevieb, good questions. Mayo Clinic Connect is an online community, connecting patients and family caregivers with..."
Is there a mechanism to get a "second opinion" about specific topics from medical experts in the field of PMR/GCA? I don't mean a second opinion about a diagnosis or treatment recommendations that would replace my own personal physician's opinion.
Most of the information I receive is from a qualified medical professional that I have encountered as a patient. The advantage is they know me personally and I can ask them questions. I can google information about the topic to get additional information if I'm interested. However, almost all research articles toss out information with the disclaimer, "more research is needed." I think doctors converse all the time with each other and still have differing opinions. I think it would be interesting to see what other medical experts in the field of PMR/GCA think compared to what my doctors think.
There is tons of information about the negative effects of long term prednisone use. Yet, for PMR/GCA, long term prednisone is said to be the "best option" to the extent that I was discouraged from trying anything else. There is no shortage of "patient experts" so a few professional medical opinions would be nice too. For example, I'm interested in biologics as treatment for autoimmune disorders in general. I don't necessarily like to "promote" any specific biologic just because one worked for me. I wouldn't want to discourage one either just because it didn't work for me.
Just wondering ... some topics are beyond the realm of most patients but you have to rely on another patient's personal experience which might be misleading.
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Fantastic. (I was confident I would not be disappointed with any position from Mayo)
BUT:
The majority of what I read are from individuals desperate for two things:
1) How to make lifestyle adjustments that allow functionality under the effects of PMR..... which besides diet, activity, and rest include how to encourage the body to naturally begin manufacturing Cordisol.
2) How to finally eliminate the use of Prednisone, and understand why the body would even make enough Cordisol as long as the cordisol was already supplied by the Prednisone.
I'm getting zero information from my Rheumatologist and almost zero from my endocrinologist.
Informative Abstracts on Cordisol are coming from Neurologists.
I am a 73 year old who has been surfing on an international level (3 meter waves) for 58 years. I have for decades lived a lifestyle dedicated to physical, mental, spiritual health. I have a foundation to maintain wellness. But it has always been based on good and effective information.
I think a case can be made for Mayo to " break the blood brain barrier" (you are the brain, we are the blood)...... And either say:
1) Here is some interesting reading for a particular discussion
2) We don't know anymore than you guys. We have no answers for you.