“At least it’s the enemy I know.”
That is no reason to stay with a doctor who can’t figure out what’s wrong with you. Yes, it’s hard to go from doctor to doctor. It’s expensive. It’s tiring. The worst part is getting your hopes up then getting them dashed again. It’s painful. It’s dispiriting when they give you “the look” & express their ignorant erroneous conclusion, i.e., that they don’t believe there IS anything wrong with you. But for the sake of your family, for the sake of your life, you have to keep searching for the doctor who will figure it out.
Ha! I should talk! I don’t have a treating doctor. My doctor moved nearly 1653 miles away about 10 years ago. It had taken 4 years to find him & I almost died making my way through about a million other doctors who HAD NO IDEA what was wrong with me. After he saved my life (and my father’s) & started me on treatment I did fairly well. I maintained even off medications for several years. Until three surgeries in four years, one of which removed all my reproductive organs thus taking away my essential hormones. Being the caretaker of both my parents in their last years, and getting allergy shots for four years while already in a relapse, has brought me to the brink of catastrophe once again.
ALL DOCTORS ARE NOT CREATED EQUAL
I’ve gone to many doctors who claimed to treat dysautonomia. Here’s a story you may not hear every day. While I was in the office of one particular doctor, an old woman sitting across from me in a very crowded waiting room – at least 50 people – waiting her turn to be called in DIED in her seat. The patient sitting next to her, also waiting her turn, happened to be a nurse. The poor old woman’s head fell slightly sideways onto the shoulder of the nurse, who looked over at the old lady and said, matter-of-factly, “She passed away.” The nurse felt for a pulse. There was none. “She’s dead,” the nurse confirmed to one and all. Loudly. The doctor heard all this commotion and rushed into the waiting room.
All other patients were asked to leave as the doctor and my sister who’s an RN, performed CPR on the woman until an ambulance came. (The nurse who pronounced the woman dead wanted nothing to do with the CPR & she was out of there.) I was sitting on the side of the room in the wheelchair I’d come in until my sister had done her duty for the poor old woman who died waiting to see her doctor.
That was of course a one-in -a-million very unfortunate occurrence but it certainly put me off going back to that office. Other doctors I went to over many years were completely ignorant of dysautonomia & POTS even though they advertised as treating the condition. It was maddening.
At the moment I’m mentally stuck. I can’t handle going through again what I went through 20 years ago: going from doctor to doctor getting no help as all – that’s if I was lucky. Most of them said I was making up my symptoms, called me a liar to my face, and worse, and it is just not something I deign to put up with at this time.
What is happening is two wonderful non-dysautonomia doctors I’ve know 40 years who I trust implicitly are doing their best to help me. I can feel time is not on my side so I pray to God they come upon the right treatment that will arrest the progress of my current deterioration, before it’s too late.
If you find yourself in the same situation take a look at Dysautonomia International.org‘s worldwide list of treating doctors. You’ll find many other helpful websites on my LINKS page. If you want to read more about my luck with doctors & dysautonomia, take a look at my story, Journeying Through Hell & Back – AGAIN!
Photo credit Imgflip.com
