Miqual

Natops - may I ask what your diagnosis are? I myself test high on the N-calcium channel antibody, and I know in my own attempts to research that, don't come up with much. I've been given a diagnosis of autonomic hyperactivity of suspected central nervous system origin, and they've given me the general over-reaching term of "calcium channel disorder". They also tacked on atypical trigeminal autonomic cephalgias

My Dr's assistant mentioned that particular Autoimmune antibody is often found after people catch Epstein Bar and the Dr isn't reading into the test result much yet. He wants to do all the Autonomic Neuro testing first and pair it all together. When I had my first appointment with him after fighting to get my old GP to get me to see a Dysautonomia specialist, I suspected there would be an autoimmune component found given my family history and asked the Dr if that could be investigated. On my Dad's side, one aunt has Lupus, another aunt had Graves Disease and had her thyroid removed, my grandmother had rhuematoid arthritis, my grandfather had thyroid cancer, and then both grandparents died of lung cancer. My younger brother was diagnosed with juvenile rheumatoid arthritis as a child. On my Mom's side she is diagnosed with fibromyalgia and fought breast cancer, her sister is dying of Breast Cancer, and my grandma had RA, and my grandfather died of bone cancer. A heavy autoimmune and cancer history in the family. Strange thing too is my father this summer caught a "mystery" virus that at one point was diagnosed as Lyme Disease, another time as West Nile, and then they said they were not sure what he actually caught. He's now having some symptoms similiar to my Dysautonomia type symptoms as we're all a bit freaked out.

Hi everyone, after a detour to being fully medically prepped and literally days away from surgery to remove my adrenal gland even though they had no MRI/CT evidence to match the mIBG scan and hormome levels, an outside Endo stepped in and said it wasn't Pheo. I'm back in the Autonomic Neuro direction for diagnosis. My Autonomic Neuro specialist at Stanford had sent my blood off for the Mayo Autoimmune profile and the results just pushed to my patient web account so I could see. It's showing the presence of "Calcium Channel Binding Antibody, N-type." It says "This profile, in the proper clinical context, would support neurological autoimmunity. A paraneoplastic basis should be considered." I'm set to have my full autonomic neuro testing routine done at Stanford's lab on June 10th. The Dr's assistant told me he didn't feel there was a need for a referral to an autoimmune specialist yet, but after testing process, the Dr. will further discuss results and next steps. Anyone here with autoimmune basis for their Dysautonomia and have familiarity of what this test may mean?

Hi everyone. I finally got into the network of Dysautonomia Dr's this spring and thought I'd finally have an answer to my 20+ year medical mystery and drama. I saw Dr. Jaradeh, the Dysautonomia specialist at Stanford's Neuroscience clinic, and he immediately thought my previous Dr's assessment at UCSF was wrong and that I did in fact have Pheo and ordered an mIGB scan. The scan lit up both my adrenal glands and I was referred to the Pheo surgeon at Stanford. His follow up MRI however did now show any evidence of tumors. I previously had a CT a year ago in which they did not see a tumor. They said I did not have Pheo since my catecholamines, although consistently coming up abnormal in every test they did, but not to the level and pattern expected with Pheo, and I had a broader symptom range including neuro issues not normally seen with Pheo. It was at that point I was told I was bipolar and made to go to Psych who angrily returned me back to my Dr's stating I obviously had a physical condition!!! Back on point, here though, the surgeon's at Stanford still believe I have Pheo, and they are planning to pull my right adrenal in a few weeks, and monitor to see if symptoms improve. If they don't, then they want pull the other one too. My fear is that they will get this far, and it will still not help and its not in fact adrenal tumors. hat stage, I'm now required to be on a lifetime of hormone replacement but still suffering from my symtpoms! Help! Has anyone gotten a Pheo diagnosis that was then pulled back? Has anyone heard of false positive mIBG scans? Most of the info I find related to them finding different types of tumors instead, and like I said, my CT/MRI's dont show anything. Thanks for your input if you can!

Actually 2 MAJOR outbreaks in 20 years. I've been battling symptoms the whole time in between, a lot of them quite difficult. After basically having my late teen years taken away from me due to this and they told me back then there was nothing they could do for me besides the blanket "hyperdynamic autonomic nervous disorder" diagnosis, as things settled into being more livable, I basically ran from everything and just dealt with them rather then using Dr's. My GP's I moved amongst as I was an adult and moved out of my parents house during that time had no clue, and to my own fault, I didn't tell them as I was trying to almost deny they were related to the childhood stuff and my "worst nightmare" of it coming back happening. It's why I was in and out of hospitals and Dr's for things such as exertion migraines, atypical chest pain, arthritis, anxiety and other things but there was no one to put all the peices together into one whole part. It wasn't until spring of 2011 when I went under anesthesia for artho knee surgery to clean up bone fragments, shortly followed by anesthetic for root canal surgery that this latest severe outburst happened. RIght now the Dr thinks the Dysautonomia/ hyper-POTS symptoms are not the problem in itself, but symptoms themselves of another issue. Thats why for now he's ordered the MIGB scan to see if the Pheo Dr. missed a Pheo tumor due to it not being on the adrenal gland itself, checking to see if I have Porphyria, and also looking into Auto-immune origins of these problems.

I was a lifetime bicycle commuter, 5-6 day a week exercise type person mixing weightlifting with cardio and spin classes, and a hardcore downhill skier in the winter before this second outburst this last 2 years. Went through the standard deconditioning at first as I was down to doing nothing. Started getting back first through daily stretching and light walking (as much as I could handle before getting too dizzy). But started doing mostly floor based Pilates as I started feeling a bit better. Had seen here on the board in a previous exercise posting a link to the Blogilates pilates channel on Youtube someone had put up, and slowly started adding short Pilates videos from there into my daily routine. Little by little I was able do do more and more, and now have my bike up on a indoor trainer in the garage and slowly upping the time on it. 20-30 min is the max and can sometimes blow me out pretty much for the rest of the day but symptomatically, I'm doing better when I keep on those routines. I tend to catch cold/flu's ALOT this winter, and when I step back from working out due to that, I notice symptomatically with the Dysautonomia symptoms, things tend to start acting up more and more the longer its been since I workout

After 17 months into the second "outburst" of what was deemed a medical mystery and possible "hyperdynamic autonomic nervous disorder" 20 years ago, I finally got into the Dysautonomia Dr. network after some initial appointment rejections, and had my appointment with Dr. Jaradeh at Stanford yesterday! My GP had basically given up last April and I basically self-diagnosed and drove her until she got me this appointment after discovering the board here as well as other Dysautonomia support information online. Have posted a few times and exchanged messages with some of you and it really helped in getting on some lifestyle and self-treatment directions that created some quality of life improvemnts until I got to this point, so I definitely owe you all a thanks for existing here! Dr Jaradeh believes I may actually be the 5-10% who have a Pheo tumor that don't show up on abdominal CT scans ( I had seen a Pheo specialist due to me testing super high on adrenal hormones in 24 hr urine tests both as a child and now, but he cleared me due to a negative CT) and he has ordered a more advanced body scan (can't remember name) as one option, but he's also testing for a variant of Porphyria also and doing the 24 hour urine test for that tomorrow. And he's also scheduled me to come back to to do the full autonomic nervous system testing routine that Stanford does too. Question for now though, have any of you been put on Desmporessin tablets/spray to reduce fluid needs/excessive urination? He put me on that to start until I have my full range of testing done and wondering if anyone had any insight on

Kelly.. This outburst came with a dual whopper of a summer: knee surgery under anesthetic followed shortly by emergency root canal surgery with anesthetic. I had knee surgery and went under anesthetic in May of 2011 and that summer started feeling worse and worse. I thought it was due to the intense physical therapy making me more tired, but by the end of July, I started getting scared because it started feeling like my childhood bout all over again, and that was my worst nightmare. (I had been basically trying to block out my childhood experience as a defense mechanism for survival, and forgot about the diagnosis when my childhood home we rented was torn down after being discovered to be infested with toxic mold and the landlord called crying and apologizing saying she thought it all might have been her fault. I never told any of my new Dr's and spent my adult life getting diagnosed with one weird thing after another) Back to this time though, i was getting flushed skin in face, heat control issues (too hot or cold) some light chest pains at certain times, racing metabolism, exhaustion, trouble breathing in the prone position, waking up several times a night. The real stuff kicked in that August 2011 when I had to have dental surgery and get a root canal and had dental anesthetic. Right after my face started going numb, felt like my throat and sinus weren't doing their natural clearing, and I was feeling worse and worse along with it, and all the other symptoms were quickly getting worse. Could see it in pictures too, getting thinner and thinner, and my right eye started drooping. Started seeing Dr's in September 2011 and they were initially looking into the throat issues when I was hospitalized with an unknown viral infection, and then while in the hospital, I caught a rare form of strep called Strep G while there too. After that point I never recovered, and was getting intense pain in my neck, numb face, light headedness, pounding headaches, digestive issues, really bad chest pain and pressure, the feeling that my throat was completely collapsing in, bouts of itchiness, my veins started bulging out of my body, had mystery bruising on me, would get super flushed, racing metabolism, cold/white hands and feet, buzzing in my ears, times of blurred vision, basically most of what I've come to find out that people with Dysautonomia experience. They did a whole bunch of testing, starting with cameras in throat, then onto brain MRI/MRA, sent me back to psych who sent be back to medical, blood tests for various things, and nothing was coming up. It was then that I finally mentally got past my denial/blocking I had done about the childhood stuff, and told Dr all about it and she started to backtrack testing they did back then. Immediately they hit on something with 24 hour urine test showing high levels of adrenal hormones on several rounds of them, and sent me to specialist for Pheocytoma adrenal gland tumors. They did adrenal CT and no tumor, and he tried to send me back to Psych who once again said no, its medical. At that point my Dr basically gave up. But I pulled the childhood medical records for her and we found the "Hyperdynamic Autonomic Nervous Disorder" I had been in denial about and it all came connected. Through me doing online research of adrenal disorders and autonomic nervous disorders I found out about Dysautonomia and POTS and literally cried when I read about peoples experiences and how it sounded EXACTLY like me. Since then I've found this board and been pushing my Dr. She tried Mayo and they rejected my case, she then tried the NYU Dysautomia Center and got turned down by them also. And thats where I am now. I've healed VERY SLOWLY with time, and the return to light exercise, tons of fluids, tons of gateraide and coconut water, and now Magnesium and Klonopin are helping. But still no Dr. assistance

Still waiting on SLOW referral process as well as non-cooperative/confused primary care Dr. to finally get diagnosed after a year of dealing with the second outbreak in my life of what in my teen years 20 years ago during the first outburst, was diagnosed by a neurologist after 2 years of traveling to different Dr's as an observed symptom pattern he called "Hyperdynamic Autonomic Nervous Disorder" with blood vessel control loss. He told me they didn't have an actual understanding of the disorder back thena nd after trying beta blockers that didnt work, basically I healed with a few years time (although have been dealing with the symptoms in moderate levels the whole time) During this time with the second outburst I've been using this board for research help on things to do on my own. First improvement came with massive increase of salt and using Gatorade/Poweraide and lots of coconut water during the day. Started light exercising again first as much in the laying down position as possible, but now upright too. But 2 things recently have seemed to REALLY help and wondering if this is indicative of diagnosis: 1.) Magnesium supplementation. 2.) Klonopin After reading about some of the Mast Cell Disease tie-ins with Dysautonomia, having had multiple 24 hour urine tests confirming i'm hyper-adrenal, and having a STRONG family history of Fibromyalgia and Arthritis diagnosis, I asked my Dr. to prescribe me Klonopin. She very much went along as she's tried several times to imply this is psychiatric and dump me off on psych only to have them send me back saying "no he has a medical condition" (in fact in the interum between outbursts i was diagnosed bipolar as well as having other things such as exertion migraines and atypical chest pain). And the Klonopin is really helping do. I had been struggling to sleep, and waking up on average 5-6 times per night to urinate, drink more, and feeling speedy. That has gone down to 2 times. Feels like it slows down the hyper-adrenal part too. But most importantly, it seems to have really helped along with the Magnesium in vasio-restriction, as my veins used to absolutely bulge out of my body, and when I elevated those parts, they would completely empty and be non-swollen. The veins are now so much smaller on both the MG and Klonopin. Do any of you have Mast Cell and are on these meds to speak to this being indicative as Mast Cell being the underlying driver of the Dsyautonomia type symptoms I have? I'm basically driving the process for an overwhelmed/busy primary physician and doing all this research and telling her what directions to take as she's tried to give up and say there's nothing she can do for me several times. Hoping to be able to maybe push her in Mast Cell investigation and wondered what the testing mechanisms are for this. Thanks everyone, hope you're all hanging in there!

Thanks for the words and suggestions everyone. Seeing my primary physician tomorrow and bringing some more information to her. Over the last 2 months I've started following a lot of the dietary and lifestyle change suggestions from here and some other Dysautonomia sites and finding they are helping take an edge off of things, especially since I dove hardcore into heavy salt-beverage intakes. Fingers crossed here. I've got the childhood records with the "hyperdynamic autonomic nervous system" diagnosis over to her already. Mayo has turned us down saying they didn't think there was much they could do to help. I have yet to have any sort of tilt-table testing done and that will be brought to her attention. I'll keep you all posted and look forward to participating with everyone here. Good luck to you all too!!

Hi everyone. Started following this site recently after the re-emergence of a previously unsolved medical mystery that arose 20 years ago in my teens. I was diagnosed back then as having "hyperdynamic autonomic nervous condition relating to blood vessel control loss and hyperactive adrenal gland" but was told back then not much was known. I spend the best part of my high school years being shuttled amongst specialists and to Mayo twice before they gave that diagnosis, and after a trial of beta blockers not working, was told there was nothing they could do. It improved as puberty settled and I have run from it for 20 years, getting treated and diagnosed for a range of things including exertion migraines, atypical/unexplained chest pain, heart murmur, and even told for many years I was bipolar. After going under anesthetic for knee surgery over a year ago, everything returned but many times worse. I have a very confused family Dr. who I did not tell of the past problems when I took her on, and she's struggled to help me. She is convinced no conditions exist affecting nervous and vascular systems and keeps trying to say there is nothing she can do for me. I found this site and literally broke down in tears in hearing everything I've experience symptom wise, everything I've gone through Dr struggle wise, and a long time mystery probably solved. The unexplained chest pains, headaches, issues in seated/standing position, dizziness/lightheadedness, heat and cold sensetivity, body temperature control issues, flushing, raging thirst and fluid requirements, night sweats, inability to sleep well, frequent urination, dark lower legs, swelling of feet/legs, shakiness, exhaustion. That's been my life! So far I've convinced my Dr. to try Mayo and the New York Dysautonomia Center, but since she is disbelieving, I don't thinbk she's giving them the information needed to get them to take me on for an appointment. I've tried calling several of the specialists on the Dr. list here but all are telling me my Dr. has to refer me. Can anyone give me an idea of what they did to navigate past the roadblocking of their Dr? I was laid off my job of 17 years this summer and am using the last of my money to pay for my COBRA insurance, and that money is running out. If I dont get someone to see me soon, I will stay undiagnosed, untreated, and uninsured. Thanks everyone. Your posts here have been keeping me going through this hard time, and looking forward to some input as well as being able to participate!!