4everOptimistic

Interesting you should mention that about Yaz, dani. I have PCOS and was told it should help with my symptoms. I took it for 3 months and it was horrible!!!! I had to stop b/c my hormones were a wreck and also had uncontrollable bleeding. I have not been on ANY hormones since them. No way, no how! Now, I take glucophage since I have PCOS and am insulin resistant. It really works to control my hormones but I think that is only because I have PCOS. It probably doesn't help the POTS.

Hello. Just recently had a tilt table test at the Cleveland clinic and am looking at my results. I won't go to talk with the doc to go over all the lab results until mid March. I thought I would pick your brains now instead of wait. LOL How does HR and BP respond in a person with dysautonomia compare with the HR and BP in a normal (or would it be negative) result? What should the numbers be and how much should they change? (BTW, I tried to do a search but couldn't find the info. Feel free to tell me where to look. )

Babette, I was sent to the Cleveland Clinic in order to diagnose the extent and specific type of dysautonomia. My endo had discovered that I suffered from POTS but wanted further testing done. The doctor at CC ordered extensive blood work, including a 3 Hr glucose tolerance test (I currently am diagnosed with insulin resistance and Polycystic Ovarian Syndrome). I will also have a tilt table test, QSART sweat test, and an EMG. They are going to do 3 muscle biopsies on my feet ankles and knee areas as well. Apparently, I have restricted feeling in my toes. I thought they were just cold!!! Eek. After this testing, I will meet with the Dr. to go over the results and discuss further action. I'll be sure to let you know how it goes and please do the same after your appt! Lora

Just thought I should post an update after I went to the appt in case anyone else ever had the same question. No, they do not do testing on the weekend. I have to go back in about a week for additional testing. Then, I'll meet with the Dr. about a month later after the results come in. Additionally, they only do biopsies on Mondays. (That's why I have to wait a week.)

mdcountrygirl, it looks like you have gotten great advice. I would suggest going to both appts as well. But be sure to check with your insurance b/c I was told to make sure that the insurance pays for multiple 'opinions.' I just got back from an initial appt at the Cleveland Clinic and go back next week for testing. The doc was very thorough and put me at ease since I was nervous!!! My HR and blood pressure was way up. Yikes! (I usually have low blood pressure and high HR) He was very easy to talk to as well. The only downside to the visit is that I will have to go back 2 times. Once for testing and then again to go over results and treatment. I wonder if they can condense the time if you are coming from out of state?

Hello! Just got back from an initial consult with a Neurologist at the Cleveland Clinic. He suspects I have Small Fiber Neuropathy with related Dysautonomia and I go back for additional testing in a week. I've tried to find out more info on this condition by doing a search here and at the DINET website but can't find anything. I notice that others have SFN mentioned in their diagnosis. Could you please share with me what exactly it is? I know what diagnostic testing they are planning but not what to expect after a diagnosis. Thank you.

Babette, I have an appt. this Friday and got in pretty quickly--2 weeks after I was referred by my Dr. I'll let you know how it goes.

Thanks for posting those links, Lily! I really enjoyed watching the video about Linda. I loved the diagrams they showed of the autonomic nervous system.

Hello! Well, my appt at the Cleveland Clinic is quickly approaching and I am very thankful! I have called the specialist's office to find out how much time I should expect to be at the Cleveland Clinic. Okay, call me silly but I was kinda surprised when they told me they usually advise their patients to plan on 2-3 days of testing. My appt is late in the day on Friday so I'm not sure how much testing they will fit in. Unbelievably, the receptionist couldn't tell me if they do testing on the weekend. Does anyone here know? Has anyone had testing on the weekend? I don't mind heading back to Cleveland but I'm a planner. Thanks.

Thanks so much, Firewatcher! I completely missed that. Oops.

Jan brings up a question that I think we have all had a one time or another. "What are the normal types of tests?" Is there someplace at the DINET Forums that has them all listed and explained? It might help the 'newbies' (like me) to have one place to look. Just a thought! Jan, keep us posted and I'm glad you have found a Doc you are confident in. That means a lot!

Thanks all for your replies!!! And for the pernio definition, Maxine! I'm currently working on getting all my records, including films, x-rays, etc. Talk about a process! I hope I can get it all done by Friday. LOL Has anyone had to get slides of their biopsies?!?! Is this even possible if it's been over a year? Ugh. Thankful, thanks for all the excellent info on peripheral vasoconstriction. I'll have to look into that all further. I never made a connection between my summer and winter symptoms! Very interesting! My feet were always swelling and turning red this past summer. I kept hiding them. You know, the curious thing is that I do not suffer from Raynauds. My daughter (age 6) was diagnosed last year, though. I only have pernio symptoms. From what I understand (and I'm still trying to figure it out), the blood vessels constrict during cold conditions and then cause the blisters and redness upon 'thawing.' This is usually about a 12 hour process for me so it doesn't always show up right away. But I get really cold easily. For those of you wondering about the difference between pernio and Raynauds, I'm not entirely sure what the clinical difference may be. I can tell you based on the experience in our household. My daughter had a diagnosis based on symptoms. Her feet go from ghost white to pink to black/purple progressively. For me, pernio is painful because the blood escapes through the skin and presents itself as redness, blisters and even pustules. I can't even walk when it gets too severe. I wear mittens and boots as soon as the temperature drops below 60 degrees. BTW, I had extensive testing done after the pernio diagnosis and they determined that my pernio was not caused by an underlying illness (ruled out Autoimmune, blood disease, cancer, Lupus, etc.) Now, I'm not so sure. I'm thinking it is related to some type of dysautonomia. Pernio can be secondary to Lupus but usually presents itself in the form of a rash on the face and nose area.

Hello! As a new member, let me just say that the info I have received here so far is invaluable. Thank you! Although I have been suffering the symptoms of dysautonomia for a couple years, I just recently received a diagnosis . Or at least, it is what my endocrinologist suspects I am suffering from since I have most of the symptoms but have not gone through testing to diagnose me specifically for dysautonomia. But man oh man, have I had testing!!! I think you all can relate. I am currently diagnosed with PCOS (Polycystic Ovarian Syndrome), insulin resistant, pre-diabetic. I get all the related blood-work done 2X a year. At least. More like 8-10 times a year! Last year after biopsies of my hands and feet, it was discovered that I suffer from severe pernio. I think I saw that a few of you do, as well. I would love to hear from you. I now wonder if it is related to dysautonomia. What I am wondering (and hoping you all can guide me) is where do I go from here? I have an appt at the Cleveland Clinic January 30th and am so thankful they got me in quickly. I am new to the diagnosis and am not sure what all the terms and testing mean. (I don't want to waste the Dr. time explaining everything to my husband and me.) Help!! What is one piece of advice you each would offer? Thanks!

Oh how I wish I had seen this on 2 days ago!! I was just recently diagnosed with dysautonomia and am still learning what aggravates my condition. So I had no idea what would happen to me when I had to carry a screaming child up four stairs of a parking garage. I thought I was going to die right there. My HR quickened and was pounding in my ears. I could hardly breathe. And once I got to the top, I had a weird cough for at least 3 hours and had to stay still on the couch. It was horrible! Has that happened to anyone after walking up stairs? What alleviates the symptoms?