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Dr. Diana, both a doctor (therapeutic optometrist), and a recovered POTS and ME/CFS patient, offers help and hope for POTS, Dysautonomia, Ehlers-Danlos syndrome, Chronic Fatigue, Chronic Lyme, vascular abnormalities, Fibromyalgia, and Multiple Sclerosis. Dr. Diana is now working full time at POTS Care.

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Reply To: Please help unsure about diagnoses and how to proceed

NEW STUDY! Parasym Plus™ for Multiple Sclerosis › Forums › PrettyIll.com Discussion › EDS/MS/Chiari › Please help unsure about diagnoses and how to proceed › Reply To: Please help unsure about diagnoses and how to proceed

May 23, 2013 at 5:38 pm #3675
Laura
Participant

Breakspear private hospital
• So I went to a private hospital when i didn’t get any better. They did tests and found hypocapnoia was causing the myoclonic seizures – 24mmhg instead of 39-45. They diagnosed me with POTS, dysautonomia. They also found severe malnutrition and evidence of leaky gut –so i was put on stuff like vit c(practically had scurvy) they found inflammation which later turned out to be Crohn’s disease –diagnosed 2010. Low blood pressure. Crazy strong reflexes especially on my legs and stomach. Blood tests showed I was making bone slower than the rate I was loosing it so I was at risk of osteomalacia. (but no dexa scan.)Candida. Mitochondria not working well. Chemicals in body.
• Treatment – co2 which helped with the seizures, immunotherapy for allergies – i had to come off all antihistamines as a result. It helps with some of my allergies. Nutrition and diet. Flurocortisone for POTS which lowered my pulse. Lots of salt. Anti candida diet and antifungals.
• I was given an MRI because of the water hunger but it was normal.
• In 2010 I got diagnosed with Crohn’s after a colonoscopy and was put on steroids. When I had the colonoscopy the conscious sedation didn’t work for me. When I came off the steroids the private hospital put me on a no grain, no sugar etc diet and low dose naltrexone. (LDN was a miracle in may 2010 it got me out of bed for the first time in 19 months. EVntually i got to the point where i could walk 4 miles a day (even though my limit had been 20 metres for 1.5 years!) Various things such as infections, my sister dying, and overdoing it (kayaking) have put me back in bed since.
• The only problem is now the doctors are running out of ideas.
• I ended up in bed in October and i am still having problems. My wisdom teeth are partly to blame as they were giving me constant infections and have finally been removed but im still having problems. The surgery was a general as they know that the sedation doesn’t work. The local wore off quickly but the general worked as it should have no problems. The surgery itself was also good – i healed well.

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