PLEASE BE CAUTIOUS

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tysmyboo
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Date Joined Dec 2004
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   Posted 5/18/2009 11:20 PM (GMT -6)   
PLEASE BE CAUTIOUS when giving ADVICE...
 
As far as I am aware there are NO doctors or HEADACHE SPECIALISTS here on this forum. We are all people who have personal experiences with head pain and want to do our best to help one another and share our stories.
 
Please keep in mind that people in pain as well as people with less/more/different experiences than our own may take our word as a diagnosis and it is not meant to be. (we are not qualified and are not trying to diagnose any medical condition)
 
I just wanted to send out a quick reminder as I have seen some posts that contain advice that would scare me if I weren't familiar with my diagnosis as well as misinformation in general.
 
Thank you for reading!
Sara-Migraine/Headache Forum Moderator
 
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SmurfyShadow
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Date Joined Dec 2008
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   Posted 5/19/2009 12:28 AM (GMT -6)   
Sara I dont want to sound harsh here, but we are NOT doctors, HOWEVER, in a way we are our OWN DOCTOR. We know our body the best. At times I may SEEM that I am diagnosing, but look at my signature, I go off of MY experiences AND MY MEDICAL TRAINING. ANd I do not provide misinformation--I provide the harsh truth and facts of possibilities and how it is ESSENTIAL that they follow up with a MORE QUALIFIED person(s) than I or us. Apologies for sounding harsh, but I speak the truth and I know this was directed towards me.
 
Smurfy Shadow/Desirèe 
DX: Wegener's Disease, Migraines, Diabetese Type II, PCOS, Lactose Intolerant, Benign Heart Murmer, Depression, Asthma, Asperger's Syndrome, Necrotizing Gramultous Inflamation in eye, A.D.D., Acid Reflux, Tumor Behind the Eye, Carpal Tunnel, Fibromyolgia, Clasterphobic, Arthritis
Medications:  Tri Nessa, Percocet, Metformin, Prilosec, Protonix, Zantac, Advair, Cingulair, Albuterol, Calcium + Vitamin D, Pro-Air, Pepcid, Rolaids, Zofran, Compuzeen, Refresh Plus Eye Drops  PRN: Epi-Pen, Albuterol Nebulizer, Benedryl
Undergoing Radiation Taking Lorazepam (Ativan) on Radiation Days


tysmyboo
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Date Joined Dec 2004
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   Posted 5/19/2009 7:42 AM (GMT -6)   

Desiree,

This post was to everone not directed at you. However, if you feel the need to take it to heart that is ok as well.

You are correct, we are our own advocate and do know OURSELVES better than anyone else. We have a responsibility to know our bodies and learn as much as we can but, just because we know how WE feel and how things affect US doesn't mean that it is the same for other people. That is why I asked everyone to be cautious about the advice they give, just because something works for you doesn't mean it will work for everyone. :-)

Providing the truth for people is good, being harsh or providing "the harsh truth" can be toned down a bit. Think about it this way, some of the people that stop in here may not  have been to a doctor, they might not know anything about migraines/head pain etc and telling them "you could have a brain tumor" is terrifying and unnecessary. The possibility of a brain tumor is there but definitely a smaller chance then them having something less serious.

Let's forcus on sharing things by saying things like, "My experience with xyz is..." regardless of medical training.

Have a great day!

Sara


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SmurfyShadow
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   Posted 5/19/2009 1:19 PM (GMT -6)   
Just listing options of what it could be.....they asked what it could be. And frankly, I know what a tumor is. I have one. I dont like the radiation but I do it for my 5 year old. If it wasnt for my son, I would say let me die. And if you would of read the entire post you would of saw how I said they needed to see a doctor :)
 
Smurfy Shadow/Desirèe 
DX: Wegener's Disease, Migraines, Diabetese Type II, PCOS, Lactose Intolerant, Benign Heart Murmer, Depression, Asthma, Asperger's Syndrome, Necrotizing Gramultous Inflamation in eye, A.D.D., Acid Reflux, Tumor Behind the Eye, Carpal Tunnel, Fibromyolgia, Clasterphobic, Arthritis
Medications:  Tri Nessa, Percocet, Metformin, Prilosec, Protonix, Zantac, Advair, Cingulair, Albuterol, Calcium + Vitamin D, Pro-Air, Pepcid, Rolaids, Zofran, Compuzeen, Refresh Plus Eye Drops  PRN: Epi-Pen, Albuterol Nebulizer, Benedryl
Undergoing Radiation Taking Lorazepam (Ativan) on Radiation Days


MMMNAVY
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Date Joined Jul 2006
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   Posted 5/20/2009 11:22 AM (GMT -6)   
There is a legal aspect to providing medical advice online, especially if one is a licensed medical provider in the States, therefore I would suggest that we frame any advice as suggestions and not medical opinions.
One can always speak of one's personal experience (indeed that is what a support forum is for), but we do not speak as professional providers here due to legal issues.


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Annuk
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   Posted 5/20/2009 2:23 PM (GMT -6)   
I can only reiterate what Sara and MMMNAVY have said, that our advice can only ever be anecdotal at best! We can only speak from our own personal experience.

I have been working on a 'Headache Helpline' for about 18 months now, and have had some helpline and minimal medical training to be able to do this, but as here I am extremely cautious about any information I pass on, or any suggestions I make as to what could be wrong.
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tysmyboo
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Date Joined Dec 2004
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   Posted 5/29/2009 8:03 PM (GMT -6)   

Thank you ladies!!

Well said tongue


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korbnep
Regular Member


Date Joined May 2007
Total Posts : 327
   Posted 6/4/2009 12:03 PM (GMT -6)   
MMMNAVY said...
There is a legal aspect to providing medical advice online, especially if one is a licensed medical provider in the States, therefore I would suggest that we frame any advice as suggestions and not medical opinions.
One can always speak of one's personal experience (indeed that is what a support forum is for), but we do not speak as professional providers here due to legal issues.

You make an excellent point here. And thanks to Sara as well for making this clear--I also believe that it's very important that we only share our experiences. As said in my quoted post, even medical professionals--indeed, [b]especially[/b] medical professionals--would not go further than to share experiences in this context. Due to general ethics but, even moreso, codefied medical ethics a doctor cannot diagnose or treat (which includes recommendations or advice) a patient unless that doctor officially (in person) evaluates the patient and his or her full case history. Many physicians have gotten into trouble for actions like making a diagnosis over the phone or recommending a course of action without seeing the patient.
 
I feel that it's very important that this forum is used for support and the sharing of our experiences. If we go beyond that we risk alarming/scaring people who are often in a very difficult situation. Even worse, a person that comes here for help and support can walk away with inaccurate and/or unsupported information that can have a very dangerous impact.
 
Thanks to the moderators for clarifying and staying on top of all this to make sure that we continue to have a safe and constructive forum :)
DX: NDPH, Recovered CRPS
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tysmyboo
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Date Joined Dec 2004
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   Posted 6/4/2009 10:39 PM (GMT -6)   
Thank you!

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LdyJane
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Date Joined Jun 2008
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   Posted 6/5/2009 6:29 AM (GMT -6)   
I agree with you 1000% ! Sara, thank you for starting the thread and for everyone else for supporting it; korbnep, you spoke very eloquently, thank you too.

These issues that we deal with are so difficult, long standing, frustrating and, of course, worrisome, it helps to have objective support with suggestions for coping as well as information to help you with discussions with your doctor.

I appreciate you, your suggestions and all that you do!
Janice

MMMNAVY
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Date Joined Jul 2006
Total Posts : 6927
   Posted 6/5/2009 7:45 AM (GMT -6)   
Well said korbnep.
Forum Co-moderator - Crohn's Disease:_All comments have the caveat contact your local health care provider.

I will find a way or make one. –Phillip Sidney 1554-1586

All that I am and all that I shall ever be, I owe to my Angel Mother.

The Bucket List- Have you found joy in your life?  Has your life brought joy to others?

Make sure your suffering has meaning…


tysmyboo
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Date Joined Dec 2004
Total Posts : 921
   Posted 6/9/2009 10:20 PM (GMT -6)   
Thank you Janice!
Sara-Migraine/Headache Forum Moderator
 
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