bigtrouble Posted November 25, 2015 Report Share Posted November 25, 2015 Did you talk about your dysautonomia? What did they do? Quote Link to comment Share on other sites More sharing options...
sue1234 Posted November 25, 2015 Report Share Posted November 25, 2015 I am on my 4th neurologist. The first 3 did labwork that was relevant, like autoantibodies, heavy metals, and other weird things. All were normal or negative. But, after labs, they did absolutely nothing else. I don't think they knew what else to do. This 4th one is part of a dysautonomia clinic, so should be able to address the POTS more. I am still in the diagnostic phase, so don't have recommendations yet on what to do. Quote Link to comment Share on other sites More sharing options...
ks42 Posted November 25, 2015 Report Share Posted November 25, 2015 I've been to four neurologists so far specifically for my dysautonomia. The first was a general neurologist, who did not specialize or have much knowledge of POTS, but I was sent to her because of the dysautonomia, so yes, I definitely talked about it. At that time, my diagnosis of dysautonomia was still tentative. She did a poor man's tilt table in her office and confirmed the high standing heart rate, but didn't do any other testing to confirm the POTS (like a tilt table). However, she did a bunch of other testing that would rule out underlying causes of dysautonomia, or other diseases that mimic it, like MRIs, nerve conduction studies, and so on, which was extremely helpful. The next three I saw were all dysautonomia / POTS specialists, so of course that's what we discussed. They were extremely helpful in ruling out a lot of various underlying conditions (like autoimmune disease) and confirming the dysautonomia diagnosis via full autonomic reflex testing, catecholamines, small fiber biopsies, and tilt testing. The one autonomic neurologist I have now is willing to do IVIG for small fiber neuropathy if there are any signs of autoimmune disease or immune dysfunction. So neurologists have been the most helpful specialists I've seen so far. Quote Link to comment Share on other sites More sharing options...
Guest ANCY Posted November 25, 2015 Report Share Posted November 25, 2015 I have seen neurologists for my dysautonomia symptoms from thier onset. Unfortunately it took until my 4th neurologist to take orthostatic vitals... and then proceed with fruther testing. I agree that it is important that they are at least familiar with autonomic disorders, mine does not specialize in the field but is familiar. Since seeing him I have seen several others as an inpatient at various hospitals (makes a total of 9) and realize how blessed i am to have him as my Dr. A lot of them just wanted to give psychological diagnosis and be done. My Neurologist has ordered IVIG for me and I had a 5 day course back in March with some remarkable improvment. Went from last year being unconscious for the majority of time I was sitting to beginning to start walking again, well, about 20-30 steps and then I pass out. He believes the IVIG is effective because I have blood work that point to autoimmune, just not specific. Unfortunately due to insurance I have not had any further treatment so far. We are trying to set up for me to have the drug I have already infused sometime in December.He also works with my cardiologist on managing medications for the best symptom control. Although I know this is ideal unfortunately it is not always the norm... Quote Link to comment Share on other sites More sharing options...
jknh9 Posted November 25, 2015 Report Share Posted November 25, 2015 Yes. I was not satisfied with my cardio and I had some neurological issues. For example, when I cover one eye, my vision in the other eye gradually goes dark. I also struggle with a lot of brain fog issues and have a hard time with fluorescent lighting, so I thought I'd try a different approach. They did a brain scan to rule out a tumor (since I was showing symptoms) and did some memory testing. In the end, the treatment plan was similar to what my cardio had been doing, but the benefit with my neuro was that his wife coincidentally has POTS, so he really understood the fatigue and weird array of symptoms. He also respected my desire to take as little medication as possible and focus primarily on diet and exercise as treatment. I think it really comes down to the luck of the draw as to whether one type of doctor is better than another. It's definitely a good idea to find out if the neuro has experience with POTS, though. Quote Link to comment Share on other sites More sharing options...
DizzyGirls Posted November 25, 2015 Report Share Posted November 25, 2015 Between my daughter and my mom, they have seen 12 different neurologists. Not a one helped my mom, but my daughter's last two have been helpful. The latest one we saw was from Stanford and is an expert in POTS and Ehler's Danlos (that's extremely helpful!) and the previous one is becoming an expert in not only POTS, but the whole aspect of Dysautonomia. He's an up-and-coming one. I would not advise seeing just any neurologist if you have any form of Dysautonomia. Most just don't have a clue. Make sure they are well-versed in Autonomic Disorders or are part of an Autonomic Clinic. Imo It will be a waste of time otherwise. Quote Link to comment Share on other sites More sharing options...
Katybug Posted November 26, 2015 Report Share Posted November 26, 2015 My POTS specialist is a Neurologist. We speak exclusively about my dysautonomia and migraines. Quote Link to comment Share on other sites More sharing options...
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