What kind of discussions belong in the topic "Getting a Diagnosis"? People are coming to this website and listing their symptoms and then others are giving possible diagnosis and suggestions for tests, drugs, and home treatment.
This may be considered practicing medicine without a license. I have done phone helping and answering questions online for a volunteer organization for years and I have malpractice insurance. I have been trained to avoid getting into legal trouble.
We don't know who it is that is posing as the person posting the question. It could be someone from law enforcement. From reading them I think at least some of them are lonely people trying to get attention and have found this website where people are more knowledgeable and kinder than most.
I would think the intention of this discussion topic would be to talk about how you got your or your family member's diagnosis of a Rare Disease or if you have a Rare Disease and your family is being diagnosed. Or you have a Rare Disease and you are being diagnosed with other diseases.
Is there someone out there that moderates the discussions that can clarify?
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Diagnosing
- By foreverinbluejeans
- Posted July 4, 2009 at 10:04 am · 2 replies
- In Getting a diagnosis
- Shared with the public
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- By AmyC
- Posted July 5, 2009 at 8:57 am
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That is a good question. The way I looked at this section is for people who are trying to get a diagnosis. Wondering how long it took for you to get a diagnosis? People who have signs and symptoms are trying to understand what is affecting them, so that they can know if there are any treatments or research for their disease. Many of these people likely have rare diseases since not many doctors know about all rare diseases. People who go years without a diagnosis need support too. My daughter has many (page full) signs and symptoms and no diagnosis. 12 years, it has been and still nothing.
When people first experience this type of situation it is natural to want to understand what is affecting them. They will do anything; listing signs and symptoms is a common step in dealing with an undiagnosed disease.
I have a list of my daughter’s signs and symptoms on the web after all that is how they make a clinical diagnosis and how they determine what diagnosis may be likely. If someone outside of the medical field makes a suggestion then I will take it to her doctors. That is all people are asking for suggestions, so they can start somewhere. I might be surprise how many people have actually got a diagnosis using this method.
- By TeamInspire
- Posted July 5, 2009 at 2:28 pm
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This topic is intended for people to discuss the process of Getting a Diagnosis, not to obtain a diagnosis online. As the topic description states, "With rare diseases, this can be a lengthy and frustrating process. Was it for you?"
As with any post in an online forum, no member should ever make any medical decision based on what they read online without first discussing it with their primary care provider.
If any member ever has questions about what is or is not appropriate for the group or just about the site in general you can send a message to TeamInspire or use the "Help" link at the bottom of every page.
Hope this helps,
Beth, TeamInspire
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