Thank you, Barbara. I’ll find the time to watch, believe me. Not sure how much good it’ll do since I’m treated the way I am. My cardiologist office called me back this am (the nurse). I was told that the cardiologist wanted to refer me to Mayo in Rochester. We both had a moment of confused dejavu. I told her that I thought I’d had a referral being processed for that and she was baffled and wondering if the referral had come from them. That’s 2 referrals in the last 8 days to Rochester Mayo. I may just be going, in that case. NOW, WHO THE HECK ARE THE KNOWLEDGEABLE DOCTORS THERE???!!! Help!!!
I’m planning to contact Dr. Francomano’s office to see if she has any colleagues at Mayo. Maybe if I contact the ‘heavy hitters’, I can figure out who is likely to ‘get it’ at Mayo.
I’ll be avoiding Dr. Kirmani at all costs (the CNN article about Gioia that recommends the occasional OTC Tylenol is appropriate). Since I have already tried Tylenol, I figure I can save myself a trip versus being stuck with a pack of insults. I’ve already read the article and know his viewpoint. I’ve done physical therapy and Tylenol. I do not need that advice. I need to figure out an experienced EDS neurologist, I think. Marc C Patterson, I was told by Mayo, Mn did genetics as well as neurology. Sound promising?
I HAVE BEEN DIAGNOSED WITH: mild diastolic relaxation impairment, global hypokinesis, LV function is severely depressed, EF 24-29%, mild mitral regurgitation and mild tricuspid regurgitation. That was per Echo. Cardiologist did thoracic MRI w/contrast and EF showed 52%. I was told that my heart is now stable and not to worry. PROBABLY BECAUSE ‘WORD ON THE STREET IS’ THAT I AM A LYING HYPOCHONDRIAC AND THEY THINK IT’S IN MY BEST INTEREST TO PAT ME ON THE HEAD AND TELL ME THAT I’M FINE TO CURE MY ANXIETY??? THAT IS QUITE THE CURE – YEAH – I’M BEING SARCASTIC! Anyway, I’m looking at my gold standard thoracic MRI and there are many areas that don’t fall WNL. I have no idea what it means, of course. And, you know that I won’t be asking – right! My mere mention of EDS and I’m looked at as if I have 7 heads. I JUST WANT TO KNOW WHAT IS CAUSING THE MOST DYSFUNCTION AND BEGIN MAINTENANCE IMMEDIATELY! I can’t even ask fraekin questions!!!
I think my sons school thought EDS meant ODD (oppositional defiant disorder) and they were very concerned about him being a student. It was a heck of a drawn out line of questioning. Of course, they still look at me like there is something wrong with me. Yes, I actually wish I hadn’t even mentioned. They probably wouldn’t have begun contact sports til next year. NICE LIFE, HUH! He’s 5 and all I wanted to make sure that, as he grows, they take precautions with the contact sports which were a nightmare for me to be forced to participate in as a child. Of course, I didn’t even want him labeled with EDS, much less ODD. I just wanted to make them vaguely aware. What a slap in the face! First impressions…..
I digress….
I need to figure out Mayo doctors. Bloodwork, like for mast cell. I’m not sure what else can be dxed via blood. If they have to torment me by injecting me with dye, I want them to do the MRI and MRV that Diana said. If they do my eye exam and take films, I want copies on the spot (they lost them from my last eye exam). It’s grueling, trying to orchestrate the most worthwhile testing. I do it, in part, because I am so incredibly phobic of needles. At this point, I have no strength to partake of haphazard medicine. I just want to streamline and get it over with. It would be such a blessing to figure out who can be a doctor that will treat me like a human being and have enough comprehension to carry a conversation and make me feel some sense of security. I think I’m being told that I’m fine even when doctors don’t think I am fine (according to my medical chart, my ailments are well documented). It makes me feel discounted, insulted, hurt, anxious, depressed, etc etc. If I have nothing else left, I STILL HAVE MY INTEGRITY AND TO COMBAT ME OR QUESTION ME ON THAT IS DOWNRIGHT CRUEL!! My body doesn’t even allow my word to be iron clad anymore and I have to be very cautious with what I commit to since my willpower just isn’t a guarantee of physical accomplishment anymore. Boy, did it used to be! BUT, I still get to keep my faith in God and my integrity. It’s a blow to my very core to tell me that I’m fine when there is no way on God’s green earth that I am anywhere near being fine! It truly is very cruel and uneducated.
Now I digress some more. This is my 3rd rough day in a row and I can barely make it past dinnertime. It’s a lot more than massive exhaustion too.
Thank you very much, Barbara, for the link. I’ll have to try to watch it tomorrow. I wish I could tonight but I know I can’t.