Honestly I am still struggling with finding a doctor or clinic that will actively participate in my diagnosis. I’ve been in desperate search for the last four years to no avail. I ended up having to diagnoses myself then I have worked hard to get my doctors to believe and double check my findings. Which they finally confirmed at the dysautonomic clinic in Alabama last week but because of my pulse hitting 272bpm on stress test got referral instead of any treatment. Honestly I am so tired of limited corporation from doctors and knowing there are test that can be run to help further classify and treat not getting done. At times I Just want to get in my car and drive to Texas and just let Dr. Dianna use me like a lab rat. At least I would know what was going on. I have brought up testing and treatment that I know to be helpful for us but fighting doctors is hopeless. I really wished there was a place for treatment that was helpful. I do have an appointment with Vanderbilt in February and one at Georgia health science later this month. I just started calling all the clinics around making a appointment and asking to be put on the waiting list.
Hi, these accounts of events here are familiar to many of us (what has happened to our health systems ? – have they been taken over by aliens!). I’ve had 10 years of it, I can certainly relate to the frustration (and disbelief) of how I’ve been treated – or a more appropriate description is mis-treated. For instance, at one time in the progression of this horrific condition, I was having a lot of heart/circulatory trouble and the A & E sent me home with a diagnosis of anxiety – honestly, I felt so ill, that I daren’t leave the hospital when they discharged me. I haven’t had a normal heart trace test since then.
BUT the reason for this post, was to give you an extract from another member’s post (member-name ‘MJ’), who said:
“PS I had a dream that you opened “The Driscoll Institute” and people from all over the world travelled there to receive diagnoses and treatment for POTS, EDS, etc. You were running the place and had a team of specialists and doctors. lol!”
IF ONLY!!! We definitely need a chain of them here in the UK!
Regards
Barbara
(UK)
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Head & Neck Injury (June 2002); Mild Concussion; Post Concussion Syndrome; GERD; Postural Orthostatic Tachycardia Syndrome (POTS); Peripheral Vestibular Dysfunction; Mild Radiculopathy & Small Fibre Neuropathy (right leg & foot resp.); Partially Empty Sella Oct 2002 (worse by Oct 2004); Whiplash Associated Disorder (WAD); 3mm Cerebellar Ectopia (Chiari 0); Cranio-cervical Instability (CCI) with Posterior Gliding (PG) & Cranial Settling (CS); Brain Compression; Retroflexed Odontoid; Stretched/Elongated Brainstem; Mild Scoliosis; Ehlers Danlos (EDS) type 111; Osteoarthritis; Arrhythmias (Bigeminy and Trigeminy). . . and now Mitochondrial Dysfunction, Mineral (Mg,Mn,Cu,Zn,Selenium), CoEnzymeQ10 & Vitamin (C,D,B3,B12) Deficiencies!