rje11 Posted December 21, 2015 Report Share Posted December 21, 2015 I was just diagnosed at Mayo Clinic with Diabetic Autonomic Neuropathy, a type of dysautonomia. Anyone here struggling with this? They gave me a long list of things to work on, so I will be doing that as time goes on. This affects me in so many ways and I have one question for now.Can having a bad episode in one autonomic area trigger other areas to flare up? I am very cold sensitive and got too cold the other day. I could not get warm after coming inside, no matter how much clothes I put on. I finally just went to bed, as that usually helps, but I had a particularly bad night with my blood pressure. It kept dropping down to 60's/40's when I would get up to use the bathroom and I came close to passing out. So the question is - does autonomic stress in one are trigger it to flare up in another one?Thanks!rje11 Quote Link to comment Share on other sites More sharing options...
Debbie Rose Posted December 21, 2015 Report Share Posted December 21, 2015 Hi RJE, I know for myself that a trigger of any kind can affect many areas fo my health. I just tonight was looking into the Diabetic Autonomic Neuropathy because I have had hypoglycemia for years and then was told I had metabolic syndrome (popular diagnosis for a while) and now "pre" diabetic. So are you diabetic? what symptoms are you experiencing? If I get emotionally upset I have more severe fatigue and heavier brain fog with my physical symptoms more easily triggered too along with anxiety. Eating a heavy meal will bring on tachycardia for an hour for me too-so odd!Hope this helpsDebbie Quote Link to comment Share on other sites More sharing options...
Faye Posted December 21, 2015 Report Share Posted December 21, 2015 For me for sure stress with trigger my rapid heart rate and GI spams....strange I recently found if I over eat my heart rate also seems to increase for a while....hmmm nice to see it is something else noticed. Quote Link to comment Share on other sites More sharing options...
rje11 Posted January 4, 2016 Author Report Share Posted January 4, 2016 Thanks for the input!!Rje Quote Link to comment Share on other sites More sharing options...
shadesofgrey49 Posted January 28, 2016 Report Share Posted January 28, 2016 How do you get diagnosed with autonomic neuropathy?I went to Mayo years ago and just got a general POTS diagnosis, but I'm looking into other things now--underlying POTS causes/possible coexisting stuff--including Sjogren's. I was once told I had very high insulin levels, but no one has ever found out why. I have fibromyalgia, and I wonder if there are undiagnosed nerve problems.... Quote Link to comment Share on other sites More sharing options...
rje11 Posted February 4, 2016 Author Report Share Posted February 4, 2016 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 Quote Link to comment Share on other sites More sharing options...
Sylvie33 Posted February 4, 2016 Report Share Posted February 4, 2016 Hi RJE,My dysautonomia is apparently idiopathic, and I have both autonomic and sensory neuropathy. I know it feels overwhelming, but try to see other doctors who might be important for your conditions and who might be more proactive. You may just have to prioritize who you see.For example, I've had terrible fatigue since this came on (in spades, April '15). I saw both a testing neurologist (positive skin biopsies) as well as an eminent dysautonomia specialist. They did blood work, but ultimately also just "sent me home." My advice is perhaps to next see a cardiologist familiar with dysautonomia (you can consult the physician list here, or call ahead and ask to speak with someone in the practice to see if they are knowledgeable). Best thing I did....for my fatigue is explained. I just miserably failed a tilt table test (neither neurologist did this!) and was diagnosed with neurocardiogenic syncope and POTS. I found I had other significant cardiac abnormalities...I am undergoing further testing.I also was started on a beta blocker (Propanalol) and already have more energy. This has really been an emotional boost for me...the feeling that perhaps I will feel better in the future than I do now with proper supervision, support, and medication.I've also consulted with a rheumatologist and an ophthalmologist (probably another important doc for you).As noted, it's difficult to be your own advocate, but having this diagnosis requires this. Best,Sylvie Quote Link to comment Share on other sites More sharing options...
rje11 Posted February 4, 2016 Author Report Share Posted February 4, 2016 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 Quote Link to comment Share on other sites More sharing options...
Sylvie33 Posted February 4, 2016 Report Share Posted February 4, 2016 Dear RJE,Yes, you do have a lot to contend with...but you sound strong. Do you have one really good doc who can be a sort of quarterback? I have two whom I can call and/or email. Makes such a difference...I'm having a lot of difficulty traveling now too (labile BP!). So I'm spending a lot of time on the phone now...looking for a new neurologist and a MCAS specialist. Great way to triage...if they don't call back, forget it (doc does not have to call, just someone with medical knowledge from their office). I did well today...calls from assistants to one apparently good neuro and two MCAS specialists. Talked with my PCP about this today.I found my great cardiologist on a thread here. Lots of additional info. from private messaging forum members.I hope you can get a solid, reliable team....whom you don't have to visit to talk. It's a work in progress for me, as you can see, but I'm so grateful for the good ones, and so reassured by easy and direct contact. S Quote Link to comment Share on other sites More sharing options...
rje11 Posted February 8, 2016 Author Report Share Posted February 8, 2016 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 infolRje Quote Link to comment Share on other sites More sharing options...
Katybug Posted February 8, 2016 Report Share Posted February 8, 2016 Usually, an immunologist or a hematologist would be the specialties that would know about MCAS. As with POTS, mcas is a subspecialty of these doctors. Not every immunologist will be knowledgeable. Quote Link to comment Share on other sites More sharing options...
rje11 Posted February 8, 2016 Author Report Share Posted February 8, 2016 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.BlessingsRje Quote Link to comment Share on other sites More sharing options...
Katybug Posted February 9, 2016 Report Share Posted February 9, 2016 Autoimmune issues are handles by rheumatologists, not immunologists. If you need to know more about MCAS (which is difficult to diagnose and will not be apparent on any standard bloodwork), here is the most comprehensive paper I have found on it. It is written by one of the foremost experts on MCAS. Please view the tables and figures as there is a tremendous amount t of iinformation in them.http://www.wjgnet.com/2218-6204/full/v3/i1/1.htm Quote Link to comment Share on other sites More sharing options...
rje11 Posted February 17, 2016 Author Report Share Posted February 17, 2016 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 Quote Link to comment Share on other sites More sharing options...
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