tag:blogger.com,1999:blog-6181780691238814823.post7349408362687656015..comments2023-08-28T23:22:07.966+10:00Comments on Living with Bob (Dysautonomia): Bondage for beginners and other fun things you learn from your friendly neighbourhood Neurologist.Michelle Rogerhttp://www.blogger.com/profile/16472120868084570461noreply@blogger.comBlogger12125tag:blogger.com,1999:blog-6181780691238814823.post-18525199411860653022012-03-23T01:37:43.000+11:002012-03-23T01:37:43.000+11:00man, sorry to hear this, but I have had similar si...man, sorry to hear this, but I have had similar situations. I will go home tonight and look for my qsart results that I also had done at Cleveland Clinic. they had a chart based on age for results. I'm pretty sure I've seen it online also. ttys.Coercushttps://www.blogger.com/profile/10758680177657386284noreply@blogger.comtag:blogger.com,1999:blog-6181780691238814823.post-89005652634938374032011-12-18T18:07:42.040+11:002011-12-18T18:07:42.040+11:00Jenji - I'm sorry you've been through so m...Jenji - I'm sorry you've been through so much. Some doctors are complete aholes. I've had a few over the years but none like what you've been through. Wow. I don't have my official report yet, that takes 3-4wks to come through. All I know is what he said and showed me on the day. Things like my poor pulse pressure have been going on for a few years now as have the bp and hr oscillations. All of mine was pretty evident just from a quick glance at the screens and all just adds up to the fact that my body can no longer cope with being upright, which we all seem to have in some form or another. This is the first time I've been consistently tachycardic on a test, hence the "POTS with extras" diagnosis. Sorry I can't be of more help.<br /><br />Linda - cheers Linda. Bob is way easier to say and spell but I've been using it for so long I often forget others don't instantly know what it is. :)Michelle Rogerhttps://www.blogger.com/profile/16472120868084570461noreply@blogger.comtag:blogger.com,1999:blog-6181780691238814823.post-39213181346441971542011-12-18T18:01:15.641+11:002011-12-18T18:01:15.641+11:00Esme ATLW - not trite at all :) Glad you're at...Esme ATLW - not trite at all :) Glad you're at least enjoying them. Part of the blog is about awareness for Bob, part of it is finding the funny and thumbing my nose at it all. I appreciate you stopping by and reading my ramblings. :)Michelle Rogerhttps://www.blogger.com/profile/16472120868084570461noreply@blogger.comtag:blogger.com,1999:blog-6181780691238814823.post-35145784731915297322011-12-18T17:48:11.305+11:002011-12-18T17:48:11.305+11:00Jennifer - glad I could make you laugh. It is way ...Jennifer - glad I could make you laugh. It is way to familiar for too many of us. Sometimes you just have to laugh at the absurdity.<br /><br />Brahm - I know. I love me some 80s power ballads. They make life worth living. The universe has truly decided to insert the rough end of the pineapple.Michelle Rogerhttps://www.blogger.com/profile/16472120868084570461noreply@blogger.comtag:blogger.com,1999:blog-6181780691238814823.post-27553622437936377162011-12-18T17:40:55.269+11:002011-12-18T17:40:55.269+11:00Elly - I know! How shite is that. No 80s ballads, ...Elly - I know! How shite is that. No 80s ballads, no balloons, and no damn kazoo, I will now stand and dramatically shake my fist at the universe.<br /><br />Amy - no fricken bubbles either? My body truly is evil. PS I like "Dr Tasty", it has a real ring to it. Now if he only existed in real life.Michelle Rogerhttps://www.blogger.com/profile/16472120868084570461noreply@blogger.comtag:blogger.com,1999:blog-6181780691238814823.post-3103174012935671632011-12-13T00:09:09.329+11:002011-12-13T00:09:09.329+11:00Very entertaining. I like how you put a comical s...Very entertaining. I like how you put a comical spin on not such a comical situation. Great job! <br /><br />Now I finally know who Bob is, after seeing it explained on a side column on the page.<br /><br />Regards,<br />LindaAnonymousnoreply@blogger.comtag:blogger.com,1999:blog-6181780691238814823.post-46135800620275519342011-12-12T16:16:01.264+11:002011-12-12T16:16:01.264+11:00I also had an unusual QSART test, however I cannot...I also had an unusual QSART test, however I cannot get neither a proper explanation nor the proper advisement so as to make sure I don't have something else going on top of everything else. Why? Because the neurologist that I went to see is literally holding my results hostage. Long story short: She recommended and indeed ordered the QSART, however we don't have the ability to do them in NY, so whilst at the Cleveland Clinic in Ohio I told my rheumy there (equally as clueless) that my neurologist wanted this QSART done while I was there. Yes, an annoying test, but not painful per se. I get back to NY, I call my neurologist and she refuses to speak with me because she's angry that I decided to go to CC rather than The Mayo Clinic, her alma mater. She then calls me a few days later, tells me that the results are abnormal, but says she cannot elaborate because she cannot decipher the results as written. She said "I don't know what all these numbers mean! This is fraud, you should have gone to Mayo." Yeah, well I didn't, so get over it and tell me what is going on IN MY BODY! I calm her down and tell her that I'll call my CC rheumy and ask her to call her. She says, fine. I do so. My rhemy has no problem calling my neurologist to try and clear things up, although my rheumy cannot interpret the results as its not her area of expertise and she has no idea what the test is even used for. My rheumy calls me two days later and says that she's been trying to contact my neurologist but every single time she calls, the secretary tells her that the doctor does not wish to speak with her. In other words, my neurologist is a complete lunatic who is holding my results hostage as she now will not speak to me, nor anyone at CClinic. This is almost two years ago and I have absolutely given up because I'm done playing her drama queen game. <br /><br />If I may ask, what did your results say? I have the results myself, but no matter how hard I've tried, I can't seem to decipher them as much as I'd like to. From what I can understand, my wonky results wouldn't be all that unusual for someone with POTS, which is all fine and dandy, however I'd like a certified physician to tell me so, not Google. Then again, it could be indicative of a million other things and my favorite, it could mean nothing. <br /><br />Sorry for the rant. I've seen so many incompetent specialists over the years that I've just grown weary of dealing with the medical establishment, period.<br /><br />Great blog site, btw.<br /><br />best,<br />jenjijenjihttps://www.blogger.com/profile/05776962738288748721noreply@blogger.comtag:blogger.com,1999:blog-6181780691238814823.post-51425302827126405132011-12-12T10:57:08.588+11:002011-12-12T10:57:08.588+11:00I don't know what to say, other than you make ...I don't know what to say, other than you make reading about something I know so little about interesting and funny, and of course really moving at the same time. And now I can't write back without sounding trite! Argh! I am enjoying your posts. That is all. :)esme and the lanewayhttps://www.blogger.com/profile/01598090772829311850noreply@blogger.comtag:blogger.com,1999:blog-6181780691238814823.post-42668062611495211832011-12-12T02:19:46.156+11:002011-12-12T02:19:46.156+11:00What, no more 80s power ballads? Man I knew you we...What, no more 80s power ballads? Man I knew you were going thru a rough time, but that is too much!<br /><br />I could live without blowing up balloons, always reminds me how large and round my cheeks are. Yep, I know it's weird...<br /><br />Have a great day...!Anonymoushttps://www.blogger.com/profile/11883394577835241921noreply@blogger.comtag:blogger.com,1999:blog-6181780691238814823.post-67032716632422592712011-12-11T12:23:50.444+11:002011-12-11T12:23:50.444+11:00You just made a Potsy girl'S night!! Hahaha! I...You just made a Potsy girl'S night!! Hahaha! I can relate to every detail all to well unfortunately!Jenniferhttps://www.blogger.com/profile/01036264104450175553noreply@blogger.comtag:blogger.com,1999:blog-6181780691238814823.post-57311553427696051872011-12-11T01:43:24.512+11:002011-12-11T01:43:24.512+11:00Oh, that Valsalva test. Fun. I pass out.
Add ...Oh, that Valsalva test. Fun. I pass out. <br /><br />Add blowing soap bubbles to that list of no-nos. <br /><br />Ooh, Dr. Kovacs. Used to have a nickname for him. Dr. Tasty? Dr. Yummy? Something like that.Amyhttps://www.blogger.com/profile/00068671443994496718noreply@blogger.comtag:blogger.com,1999:blog-6181780691238814823.post-58998702754843151282011-12-11T00:56:52.614+11:002011-12-11T00:56:52.614+11:00No more kazoo for you?!? Boo.No more kazoo for you?!? Boo.BugginWordhttps://www.blogger.com/profile/11469980416319902081noreply@blogger.com