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rje11

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About rje11

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    Advanced Member

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  • Gender
    Female
  • Location
    USA
  • Interests
    Photography

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  1. Thank you for all of this information! There was some reason that I could not be accepted as a patient at the Dysautonomia -MVP center in Bham, but I can't remember what it was. One of the other medical conditions I have made me ineligible to be treated there. I did see Dr. Kazamel at UAB one time, but he just did a cursory exam and said there really was not anything he needed to see me on a regular basis for, since Mayo had already done all of the diagnostic. I used to see a Movement Disorder Specialist at UAB - I had Deep Brain Stimulation surgery there in 2007 - but I have changed and am now going to Vanderbilt. I do like Dr. Hitchcock as a neuro, but I have been a patient of his partner, Dr. Greer, and would not be able to change over. 😉 Dr. Greer actually told me that I was "two grades above his pay level" at one point. He is VERY hard to communicate with via messages. I started seeing him when he first went into practice, since he was the only local doc who could program DBS units. Right now I am doing okay and I also have a wonderful Internal Medicine Doc - Dr. Kelly Lynn. I have been with him for years and he is a great doc - very caring and thorough. I see Dr. Kelley Smith here, too (cardiologist), and other docs, also. I am coming off of a 2-3 year period where I was hospitalized many, many times. Doing much better now, so I try to stay away from docs if I can. 😉 I live in HSV, too, so let me know if you ever want to try to meet up! Blessings Ramona
  2. @kimbellgirl, do the group rules allow you to say what docs you use in HSV? Good neuros are very hard to find here... I have diabetic autonomic neuropathy, but no specific doc for that. Was diagnosed at Mayo in 2015 but I live in HSV. My internal medicine doc is great, though. Does insurance cover any of those supplements you use? Thanks rje11
  3. I have Diabetic Autonomic Neuropathy and I have episodes of complete weakness, where I cannot move any part of my body. These episodes last for hours and I have learned to just lay in bed and let them pass. I had a new symptom last night which was a bit alarming, though. I would gasp for a breath and then my body just felt like it "didn't need to breathe" for 20-30 seconds. Then I would gasp for another breathe of air, but I would not breathe for quite a while at a time. I am on oxygen therapy, so my oxygen levels were okay throughout this, although they did fluctuate some. It was just very strange, feeling like I could lay there and just "not need to breathe". Does this sound familiar to anyone at all?! Thanks Rje
  4. There are two folks in our household with the Type B flu. I did get the flu shot last fall, but am starting to get a sore throat and body aches. My temperature fluctuates quite a bit during the day, so if I get the flu should I expect it to go up and stay up like it would with a "normal" person. When I get cold, it goes down into the low 97's or even into the 96 range but it can go up to the high 99's the same day. For those of you with temperature fluctuations - have you had the flu? If so, how did it affect you? Is there any reason that someone with dysautonomia is at higher risk for complications with the flu? Thanks RJe
  5. I went to Mayo in Rochester in December and was very impressed with them. I also have generalized dystonia and they actually paired me with a doctor who used to be a Movement Disorder Specialist but had switched to Dystautonomia, so he was VERY knowledgeable. Everyone was very nice and helpful there. I ended up in the hospital with what they thought was a stroke (didn't end up being that) so I was there for two and a half weeks - longer than normal. They can get more testing done there in 3-4 days than you can at a "regular" hospital in 6 months, though. Highly recommend them, especially if they are in network for your insurance. RJE
  6. Thanks for all the good input. I actually have MANY other conditions besides dysautonomia, so I don't know if that will make them concerned or not. I did call my cardio and he is out of town this week. I am going to just keep track of it and see if I end up having symptoms from it. RJE
  7. OK, thanks!! I did put a call in to my cardiologist today, so we will see what he says. RJE
  8. I have diabetic autonomic neuropathy and my heart rate always runs low. I am on oxygen at nighttime, so I use a pulse oximeter and can upload the results on my computer. It also records the heart rate and the last two nights it has gone down into the 40's (low of 44 and 48). Average overnight was about 53. Should I be concerned? I do have coronary artery disease and labile blood pressure, too. THanks RJE
  9. I have diabetic autonomic neuropathy and my body temperature fluctuates easily and quickly. There are two family members with the flu right now. If I get it, should I expect my temperature to go up (like it normally would with the flu) or is it likely to fluctuate like it normally does (from 96 to 100)? I have had the flu shot so I hope to avoid catching it, but I am not feeling great so was just wondering what to expect IF I get it. Thanks Rje
  10. They did a ton of autoimmune blood tests at Mayo, but they did not see anything concerning. My "1-Methylhistidine" was elevated at 32, but that wasn't much, as the normal was 28. My Alpha-2 Globulin was slightly elevated and my Hexosaminidase Percent A, S was low but the other test that would have indicated Tay Sachs with that was OK. My Taurine was low, but I don't think that is autoimmune related. Other than the blood tests they did do a biopsy for amyloidosis and it was negative and they did an EMG to check for myositis and it was normal. It was all of the other tests that were abnormal - heart rate, blood pressure, Valsalva, etc. I have seen a rheumatologist who also did a lot of bloodwork and he didn't find anything either. Is there something specific they should have checked for blood work wise? Thanks for the input. Rje
  11. Well, all of my autoimmune blood tests actually came back normal, so I guess that is not the kind of doc I need... They ruled out Multiple System Atrophy and Amyloidosis, so that narrowed it down to being caused by my diabetes. Sounds easy enough - just control my blood sugar, right? Well, since mine are never out of control I guess it is not that easy... Looking at some nutritional ideas, though. Thanks bunches for your input. Blessings Rje
  12. I do have a good PCP but he really doesn't have a clue how to handle most of my problems and neither does my cardiologist. I was having a nuclear stress tests and it triggered my dystonia to flare up so they stopped the test and called and ambulance and I ended up in the ER. Not much they can do except drug me up and send me home, so I try to stay away from there. What is an MCAS specialist? There just doesn't seem much that can be done to "follow up" now that I have the answers from Mayo. Not a lot that can actually be done. Yes, I am frustrated... Thanks for the infol Rje
  13. Well, I failed the autonomic reflex screen with "evidence of length postganglionic, sudomotor, moderately severe cardiovagal and moderately severe adrenergic failure." My heart rate responses were reduced, Valsalva ratio was reduced and absent late phase II and IV, positive for orthostatic hypotension, had a positive methalcholine challenge, abnormal overnight oximetry and blood pressure tests, 26.4% anhidrosis on the sweat test in an "unusual" pattern.... and that was just the autonomic stuff. I also have generalized dystonia and did a work up for that, but I am used to that. I am already on four blood pressure meds due to having very hard to control hypertension - labile - goes way up and then way down. Currently seeing all kinds of docs and am having a sleep test tomorrow night.... I have accepted the fact that no doc really has any answers - I just need to learn to live with the symptoms. I am going to work from a nutritional perspective and see if I can improved diabetes and maybe that will help, though. BP variance seems to have gotten worse. Can go from 170's/110's when I go to bed to 70's/50's in the middle of the night. It's hard to go to lots of doc appts too, since I can't drive due to dystonia flare ups. Sorry - not making excuses - just trying to explain. ;-) I still have a good life - just a tough one, physically. RJE
  14. Well, I don't know what was different, but I do have quite a few other medical issues. They had me seeing about 5-6 different doctors but I didn't have time for them all in the end. I am diabetic, so I guess that clued them in to do some of the specific autonomic testing (reflex testing, sweat test, etc) and those all came back abnormal. The tough part is - they just have me some suggestions and sent me home and nothing is better. My doc here is clueless about dysautonomia and so I just have to deal with the symptoms... RJE
  15. OK, will do. I don't snore - don't think I actually have apnea, just low oxygen... Go figure. ;-)
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