Sickly since age 39, 2003. Dropped dead with what seemed to be food poisoning on March 24th, 2003 at exactly 9:30PM. I've spent all these years fighting for the Dx's to put it all together.
2015, age 50, the pieces all finally come together: I have Ehlers-Danlos-H, plus reoccurring large (over 9mm) pineal cysts, 3 times: 2003, 2004, 2013, plus fibromyalgia, plus heart valve reguritation, supra ventricular tachacardias, POTS, dysautonomia, early-onset osteo arthritis, hypothyroidism and the THOUSANDS of symptoms that make up each of these main conditions.
Ehlers-Danlos folks often have Normal Pressure Hydrocephalus (communicating, or non-communicating) Doctors are sooo far behind on this symptom/condition. There is no one to turn to for the Diamox is need so very bad. I ordered some from an online pharmacy and it has been working great. I cannot afford to buy it like this. I need a Dr. Diana Driscoll or a Dr. Brad T. Tinkle to Rx it for me.
My GP in 2016 was/is Dr. Jillian Boroniec. she won't Rx Diamox either. She refuses to learn about my condition. Nice kid, but pretty useless so far.
My brain wants to bust trough my skull at least once a month. The tinnitus is daily.
My brain gets so crushed that when a low-pressure weather front passes I appear to be having a stroke. I am in an altered confusional state, sort of like a pre-seizure aura-land. My speach is slow, labored, slurred and studdered. My circulation reduces so far down to the core that the vessels in my feet turn black. As it escalates, eventually I begin to feel faint, my lips turn from blue to black and I have a massive seizure. I awake, usually in an ER where the idiots there forget to even get the cannula to hook up the oxygen. When that happens, it then takes 2-4 YEARS to learn to speak in full sentences again. Thanks Advocate Hospital ER! Fuck YOU!
I look a bit too close to the psycho schizto homeless Chicagoans, and one idiot intern wanted to get me to a psych ward. If they would just give me oxygen I'd pop right out of the final post-ictal phase and be able to clearly explain all events leading up to me going unconscience...again. I hate Advocate sooo bad. But RUSH is also to blame for not calling the ER on my way there. Both are to blame for the 2013 post seizure fuck up.
I am currently on LDN through Dr. Matthew Jaycox from the Rush pain clinic. I love it. only 4.5mg a day and it fixes a ton of symptoms. The severe osteo arthritis in my t-spine is not helped. I do not know how my life will progress with that. I cannot stand nor sit for very long. I lay in an $8000 select comfort adjustable bed all day, interspersed with both light and heavy labor chores...then run back to the bed to get some relief.
I have to sleep with a special ice pack jacket on at night to ease the pain in the spine.
Every symptom seems finally accounted for, and it only took 12 years and a few hundred THOUSAND dollars of wasted money on stupid doctors in our stupid medical system. I'm the one who finally figured it out in 2013. The Ehlers-Danlos lead me to most of the answers. I've been on Dr. Tinkle's wait list since 2013. I will be dead long before I meet him. ...He is now with Advocate, They know how bad their ER fucked me up, so maybe I got bumped off the list.
Please visit the partner facebook page at https://www.facebook.com/debkrolls for more updated symptoms. I took this down. the info is all out of date now.
|My eyelids are usually a mass of huge raised red vessles. They only look normal after I have a seizure. Seizures are rt. side, temporal. The 3 (2003,2004,2013) seizures reset virtaully all my systems and I awake feeling fantastic and am back to normal for up to one year. IF they remember to give oxygen,that is.
2013 they forgot oxygen and the resulting brain damage lasted until 2015. Some tiny spelling problems remain. I still have to take the partner pic to go with this one. My high rez camera crapped out.
|This is a result of systemic small vessle disease. It is in my brain as well as all over my body.|
|I began LDN therapy in the summer of 2015. I hope it works. Update August 2016: LOVE IT!!!!|