Angelika_23 Posted April 25, 2009 Report Share Posted April 25, 2009 Hello All,I am back from Cleveland Clinic. I saw Dr. Shields and Dr. Matte. They were both very nice, and LISTENED to me!They aren't sure I have POTS, but think it is something in the same family? Also, they said something about small fiber neuropathy, but I don't know what that is. I will do a search on it soon.I had a TTT, a QSART and some breathing tests. I don't have any results. My husband didn't pay close attention to the numbers during the TTT (probably because he doesn't understand what they mean), but he said he thinks he saw my HR in the 160's right before they brought me down. (I was really lightheaded and feeling nauseated). I had to get a lot of bloodwork done too. (7 vials!)They told me they'd call next week with my results and some recommendations. They said I may have to come back for more testing, depending on what the current tests show. It was not a fun day, but I will be glad if we get some answers.Angela Quote Link to comment Share on other sites More sharing options...
ajw4790 Posted April 25, 2009 Report Share Posted April 25, 2009 Hi!I am so glad to hear you made it back, and it sounds like everything went well!!! Congrats!!!It took me longer than that to get my results, but I think you may have had less or slightly different testing, so that may not be the case. I think that he was also out of the office some, which delayed things.PM me if you have any questions!I hope that when the results come back that they will have some answers for you! Quote Link to comment Share on other sites More sharing options...
Angelika_23 Posted May 1, 2009 Author Report Share Posted May 1, 2009 Dr. Matte called me today very quickly. She said all the bloodwork came back fine, and there was no evidence of neuropathy in any of the testing. She did also say I had a startling increase in HR on the tilt. I am eager to see the test result myself and see what "startling" means...So I guess it is officially official. I have POTS. Dr. Matte called it Idiopathic POTS. (?)Angela Quote Link to comment Share on other sites More sharing options...
Sophia3 Posted May 1, 2009 Report Share Posted May 1, 2009 what about the left sided stuff? Quote Link to comment Share on other sites More sharing options...
Angelika_23 Posted May 1, 2009 Author Report Share Posted May 1, 2009 That seems to still be a mystery. That's me, a mystery.The doctor is calling me back on Monday to talk about that some more.Angela Quote Link to comment Share on other sites More sharing options...
Sophia3 Posted May 1, 2009 Report Share Posted May 1, 2009 i hate a mystery.Keep us posted, sweetie! Quote Link to comment Share on other sites More sharing options...
mae Posted May 2, 2009 Report Share Posted May 2, 2009 Hello All,I am back from Cleveland Clinic. I saw Dr. Shields and Dr. Matte. They were both very nice, and LISTENED to me!They aren't sure I have POTS, but think it is something in the same family? Also, they said something about small fiber neuropathy, but I don't know what that is. I will do a search on it soon.I had a TTT, a QSART and some breathing tests. I don't have any results. My husband didn't pay close attention to the numbers during the TTT (probably because he doesn't understand what they mean), but he said he thinks he saw my HR in the 160's right before they brought me down. (I was really lightheaded and feeling nauseated). I had to get a lot of bloodwork done too. (7 vials!)They told me they'd call next week with my results and some recommendations. They said I may have to come back for more testing, depending on what the current tests show. It was not a fun day, but I will be glad if we get some answers.AngelaHi,I will soon be going to Cleveland clinic if you don't mind me asking about Insurance stuff? Did you have to pay or deal with medicaid from another state or do you know if they have financial assistants? And how long was the visit just 1 day or longer? Thanks Mae Quote Link to comment Share on other sites More sharing options...
Guest tearose Posted May 2, 2009 Report Share Posted May 2, 2009 Welcome back.It is always both wearing and exciting when we make those pilgrimages to the great ANS centers!I hope you get answers soon.I have "left sided" issues secondary from a bug bite that did damage and never fully resolved. So, I get two issues to deal with. Lymphedema and dysautonomia. It may be that they discover you have a few things going on and having a name and treatment plan hopefully will improve your quality of life~best regards,tearose Quote Link to comment Share on other sites More sharing options...
Angelika_23 Posted May 3, 2009 Author Report Share Posted May 3, 2009 Hi,I will soon be going to Cleveland clinic if you don't mind me asking about Insurance stuff? Did you have to pay or deal with medicaid from another state or do you know if they have financial assistants? And how long was the visit just 1 day or longer? Thanks MaeHi Mae,I have private insurance, so I didn't have to deal with Medicaid or anything like that. Sorry I can't be more helpful with that information. Good luck on your trip!Angela Quote Link to comment Share on other sites More sharing options...
Angelika_23 Posted May 6, 2009 Author Report Share Posted May 6, 2009 Saw my test results - My HR increased by 78 bpm during the tilt! Wow. I qualified as POTS within the first 60 seconds of the test, but hung on for almost 7 minutes.Angela Quote Link to comment Share on other sites More sharing options...
janiedelite Posted May 6, 2009 Report Share Posted May 6, 2009 Wow! That's a huge heartrate increase! When will you get the results from your QSART and other blood draws? It is validating when you finally see why you feel so badly on paper... an increase of 78 beats per minute is NOT normal! Quote Link to comment Share on other sites More sharing options...
Angelika_23 Posted May 6, 2009 Author Report Share Posted May 6, 2009 The QSART and bloodwork all came back fine. Thanks for asking No answers for the left sided pain.Angela Quote Link to comment Share on other sites More sharing options...
pearsjon Posted May 6, 2009 Report Share Posted May 6, 2009 angel, could you describe more about your left sided issues for me, if not too much to ask. i only ask, as i have a ton of left sided issues no one can explain also.and apparently i missed your postings of it.thanks, firewoman Quote Link to comment Share on other sites More sharing options...
Angelika_23 Posted May 7, 2009 Author Report Share Posted May 7, 2009 No problemSevere left sided feels like deep muscle pain. In my arms and legs, even in my side and face sometimes. I get headaches on the left side, behind my eye and the base of my skull. The pain in my leg gets so bad I can hardly walk at times. Again, feels muscular.Is that what you were looking for?Angela Quote Link to comment Share on other sites More sharing options...
pearsjon Posted May 7, 2009 Report Share Posted May 7, 2009 you just described exactly what i go through on the left side. other than the head ache ( if you can really classify it as that) is on my right side but same anatomical pain areas. you are the only one i have come across w/ this same problem, restricted to left side. so let me say thank for you that. i have been trying for over 13 years now, as to the why.my mucscular pain gets so bad (like you) that i can hardly walk. sometimes it even feels as if it will crush my bones. is yours mainly in calf area, pain wise? i do get the face and pain on the left (just skull base to eyeball pain is on the right). please lord above if you ever find anything that can tell you what this is, will you let me know? it put me down for a week last time. and that was even after laying down. do you feel that sometimes the resting helps, but does not stop it? as opposed to a blood pooling issue that does resolve after rest? my arm hurts so bad too sometimes it will actually draw up at elbow, and if very painful to try to straighten. is any of this sounding familiar?have you had to use crutches to get around before? i mean just to even get up and go to restroom?i am very curious about this. i feel like a phenonmanon (sp, brain fog sometimes. i used to tell myself everytime, that i can't be the only one out there w/ this problem.so again i thank you for the response to my questions and the ones i just asked. and i finally don't feel like a one -of-a -kind. i knew i wasn't but sure did feel that way alot. Quote Link to comment Share on other sites More sharing options...
Angelika_23 Posted May 13, 2009 Author Report Share Posted May 13, 2009 Firewoman,The pain is all over. In my calf, in my thigh, in my upper arm. Those are the spots it is commonly in.No, I have never been on crutches due to the pain, I honestly don't think I could handle walking on them without passing out. I don't get the drawing up arm thing.You are the first person I've heard of with similar left sided issues.Angela Quote Link to comment Share on other sites More sharing options...
pearsjon Posted May 14, 2009 Report Share Posted May 14, 2009 Firewoman,The pain is all over. In my calf, in my thigh, in my upper arm. Those are the spots it is commonly in.No, I have never been on crutches due to the pain, I honestly don't think I could handle walking on them without passing out. I don't get the drawing up arm thing.You are the first person I've heard of with similar left sided issues.Angelame too. that's why i was above curiosity. and in the same term no one can figure it out either.had the crutches at one point, just to get back and forth to potty, and it was not easy w/ those things, but i couldn't go even that far w/o them. my toes are killing me and sweling like crazy right now. do you get the non edema swelling? or do you have anymore specific details you can share? you can pm them if you prefer. i would appreciate it. i have scoured the web to no avail. but i do know that it is not dysautonomic in nature. nothing unilateral is, or so i am told by 2 dys specialists. Quote Link to comment Share on other sites More sharing options...
Angelika_23 Posted May 14, 2009 Author Report Share Posted May 14, 2009 I do not swell at all. Just turn funny colors.Angela Quote Link to comment Share on other sites More sharing options...
tinkerbella Posted May 14, 2009 Report Share Posted May 14, 2009 hi congrats for the official dx. I have left sided issues also and have for years. I've called it left sided weakness with numbness and facial drooping pain. I use a crutch now as two make me get so tachy. As I've progressed with fibro I do have multi focal pain on both sides but the left has always been more. Although I was DX with POTS and all the CF, FM, PN, Raynards, migraines, IB, hypo thyroid, my brain is down and I can't think I know there is more they were all validating that I knew these things were all real. I wish you the very best treatment plan for you.good luck.And if you need a friend I'm here. Quote Link to comment Share on other sites More sharing options...
pearsjon Posted May 15, 2009 Report Share Posted May 15, 2009 angel- i turn colors too. last night my8yr old said momma your left foot is blue. don't guess i will ever know. but if you find out on knees begging, please let me know.thnaks Quote Link to comment Share on other sites More sharing options...
Angelika_23 Posted May 15, 2009 Author Report Share Posted May 15, 2009 I don't think I'll ever get an answer. But on the off chance I do, I'll be sure to post on this board. of course. Quote Link to comment Share on other sites More sharing options...
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