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Surviving and Thriving with Chronic Illness

Finding a DOCTOR!

This is the hardest question I receive from patients. How can I find a doctor who understands my condition? Which doctors are following "The Driscoll Theory"? Let's share, shall we?

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So glad you posted this for folks!  (I’m having some brain fog today, so bear with me if my post is botched here and there smile.  It took me about 8 years to find a truly loving, caring, open minded, thinking outside of the box doctor.  He is an integrative doctor, who treats the body and mind as a whole.  I was at a very dark place before I found Dr. Reid Blackwelder in my area.  My doc at that time would not accept the diagnosis from Vanderbilt of ‘Autonomic Dysfunction’ over 2 years ago, & I could tell horror stories, but I know we all have those horror stories. 

But I pushed and pushed to find a doctor who cared and believed me.  I’ve battled this, growing worse each year, for a little over 10 years now.  So, finding a great doctor, is definitely a must in this.  I would also suggest once you find a good doctor, whatever specialty he/she is, since we are rare patients & so much going wrong with us, I usually have a small size notebook with me that i write down organized questions, concerns, notes (I have them ready for the appt) of which i go down my list to make the process a bit faster, and the doc likes this since I am such a difficult case.  I also take articles that i find come in handy for learning, or on new meds, research articles, etc & give them to the doc, but i try not to overload him though with them. 

For those who haven’t found a doc yet, keep searching, ask for recommendations from folks, other doctors, even phsychologists, therapists, etc.  Don’t give up, as you never know who might know a doc who likes rare cases, etc. 

My doc doesnt specialize in our diseases, but by golly he is eager to learn about them & so eager to help keep the intense suffering at bay, & he is willing to try new meds, even if they may seem way out there.  Had I not found my doc & applied to be his patient when i did, I just don’t know where I would be right now, because i felt utterly alone for quiet a few years there, & with him as my doctor, I no longer felt alone in this.  Just to know a doctor is on your side and feel it and know it deep down in your heart, is the best feeling in the world.  When a doctor believes you, wants to help, listens and cares attentively, and you know it and feel it…. oh my, that is amazing in itself. 

I am grateful for my doctor.  We may not know everything or much about DYS, EDS, CFS/ME, MCAS, but we work together on my treatments, alternative methods/supplements, etc.  Plus, I keep sending him info from here wink  and the Driscoll Theory too!  So keep digging, keep searching, and remember everyone, don’t give up!  Be persistent!  Most times WE, ourselves, are our ONLY advocate for US….. so don’t let any doctor get you down, i’ve been there many times, just keep at it wink  Much love to everyone!  And many thanks Dr. Diana for this video post!  This is a great concern & half of the puzzle for us, to find a loving, caring doc who is willing to be open minded & think outside of the box & willing to stick by your side no matter what :0)
~tennille~

I forgot a tidbit.  In looking for a doctor, when I was searching so desperately for a few years, I basically asked around for a doctor who either takes in rare cases or one who takes on chronically ill patients.  Just a thought for those in the search process.  Also, it is so very helpful to find a therapist, or psychologist who specializes in chronically ill patients.  I have found that is a huge necessity in this disease, as ones who only deal with the chronically ill, can teach & suggest coping methods and much more.  So, if you don’t have a therapist or psychologist, it might be a good thing to search for one who specializes in chronically ill patients.  smile  Hope that helps!!!  Lots of love!  ~tennille~

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Hi Doctor Diana, first of all I would like to thank you so much for creating this site. Like many other patients I came to an “Aha” moment when I was researching loose painful joints.  I have been treated for arthritis Crohn’s disease and several other complications. I live in a rural area, and I’m having a hard time trying to find a doctor that

(sorry I accidentally pressed the share button)
...doctor that is familiar with EDS. I have several doctors that I deal with and so far in the San Antonio area my doctors are not familiar with EDS. I am currently on disability because of my Crohn’s disease and arthritis and unfortunately dealing with Medicare you usually don’t get answers as quick as we wish. If anyone in the New Braunfels, San Antonio, Austin area knows of a physician that can possibly help me. I would be so grateful. Thank you, Christina

I purchased your e-book, “Your Eyes & EDS.” I have not been formally diagnosed but believe EDS is causing my eye problems. How do I get the FREE WORKSHEET mentioned in the book to give to my primary care doctor? I would also like to know more about MS prevention to share with her.  Thank you.

I purchased your e-book, “Your Eyes & EDS.” I have not been formerly diagnosed with EDS but believe my eye problems, plus, are Ehlers-Danlos related. How do I get the FREE WORKSHEET from the e-book to show to my primary care? I have MS and Parkinson symptoms too. Do you have any literature about preventing MS? Thanks for your help.

I want to print out the Driscoll Theory but I can’t find it in the articles and handouts where is it ?

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