jenglynn

Thank you everyone for your support. I WISH I would have researched the IVIG a little more before I went through with it. I guess I was so sick at the time, and at the hospital alone mostly, I just wasn't myself. I was told all of the initial side effects were normal and from what I read, it seemed to be normal. It wasn't until my last infusion that I experienced the worst reaction, which was getting close to anaphylaxis according to the nurse and I believe they discontinued right then. As soon as I stood up I fainted flat on the floor so I am not very clear on all the details. I am still bedridden with frequent syncope. If anything, it has gotten worse. My BP numbers are lower than ever. I do have a wheelchair and I can sit for a while before experiencing symptoms but an hour is my absolute limit. I never have syncope while I am sitting but tachycardia, dizziness, blurred vision, etc. My house is not very wheel chair accessible so I can't use it much to get around. I am still have to crawl or scoot to move around for the most part because of the amount of syncope. I just can't risk another concussion right now. I have a helmet but was advised even with the helmet on it won't prevent a concussion so I still can't risk the syncope from standing. I am ordering one of those rolling walkers with the seat.. That way I can sit on that and get around using my feet to move around different rooms.. and spare my knees. I plan to keep that downstairs in our basement bedroom. I do stand up as often as I can, daily, right next to the bed so I can sit right back down when I feel syncope coming on. I try to get myself upright as much as I can because I know that this will continue to spiral if I don't... but after about 20 or 30 seconds syncope comes. Sometimes I recognize it but most of the time I have no warning at all. I have had syncopal spells since coming home but so far I have been lucky- no major injuries, just the typical bumps and bruises. Hindsight is 20/20 but I sure wish I would have never considered the IVIG. Now I am feeling miserable ALL the time, not just while I am standing and sitting. Before, at least while I was lying down I felt like a normal person! Plus, with all of these changes in my labs, who knows what kind of damage it did???? I hope it is all just temporary... it seems like every thing I try just fails and I end up worse off than I was before. I am frustrated. I am a mother with SIX children to care for. I am so incapacitated now that it is so hard even get myself upstairs. By the time I crawl up both flights of stairs my HR is over 200 and I am so lightheaded and dizzy that I often will get syncope even when I am on my knees. I do make this effort every day to spend an hour or two up in our living area with the kids but there have been days lately when I haven't been able to do even that. It is almost as if they are getting USED to me being this way. That makes me more sad than anything else. This has become their new normal. A mom who spends all her time in bed, a chair or a wheelchair and can't stand up longer than 30 seconds without going unconscious. They are constantly asking me what do I need, what can I get you, telling me to eat, etc.... I am their mom and I should be taking care of them. NOT the other way around. How many times have we ALL said this???? I WANT MY LIFE BACK! I am afraid it will never happen. I am sorry. This pity party was not the intent of this post and it won't do me any good and my thoughts are my reality so I need to control them and make them positive. And I have much to be grateful for. I just hope my next set of labs show good news that my blood results are improving and not going the other way. This IVIG is just way more than I bargained for and was NEVER expecting this kind of reaction based on the information I was given. That's what happens when you don't do your own research! Lesson learned! Jen

As my other thread stated, my Mayo neurologist said I had to stop my IVIG treatment because my side effects were too severe. I was having the IVIG at my home hospital and after my second treatment there they sent me to an allergist who prescribes IVIG and he said he would not give it to me again and basically due to concerns for my life they wouldn't give me any more treatments. My last treatment was pretty bad- very elevated BP- can't remember exact number but something like 180/130 or something crazy for me who is very hypotensive. A horrible headache, like one I have NEVER had and I get migraines and headaches almost daily (I have post concussive disorder from 6 concussions). Serious breathing problems, facial flushing like I had a sunburn and my legs turned bright red and hot and swollen. Then, halfway through the rash and hives started. Horrible cold sores all over my mouth and onto to face. Lovely. So my Mayo doctor agreed. I thought I was just having an allergic reaction, turns out according to my Mayo doctor after ordering labs and going over them that I was seriously rejecting the "drug". My Ferritin level which was always low in the past (8-12) was up to 83 (the week before it was 70). I thought that was the ONE good thing that came of it is that my iron stores went up. Apparently, that's not the case. A rapid rise in Ferritin indicates that the body is rejecting the treatment. The rest of my blood tests were not all that encouraging either. Hemoglobin went from 13.2 to below 9. Hematrocit went from 34 to 25. Red blood cells had dropped quite a bit (sorry, don't have the lab in front of me so I don't remember exact counts of everything). WBC count is elevated- bad thing about that is that I don't get fevers. Normal temp is 96.8 to 97.1. I had acute appendicities in which they operated and my appendix was 80% to rupture and my temp. before surgery was 97.0. last year. My sodium and potassium were both VERY low. Don't get this because I do nothing but drink water and gatorade (with SALT in both) ALL day. Kidney function numbers had changed too but I don't think they were that bad. But I have had a problem with urinary retention lately so I wonder if that is related to the kidneys and the sodium and potassium. There were other abnormal labs he mentioned but I can't remember them off the top of my head. I have to have labs every 2 days now for the week or more for repeat labs to hopefully see things normalize. I guess it is pretty rare for IVIG (according to my Mayo doc) to cause any problems, it is pretty benign for most people. Not saying people don't get side effects and it usually only works about 50% of the time for people like us. But to cause problems like this is unusual. SOOOO... now I guess I have to wait until all of this IVIG is out of my system before I can move forward with any other treatment. He told me 8 weeks maybe. And I might experience all of those side effects during that time. Hopefully to a lesser and lesser degree. Something to look forward to I guess Has anyone else experienced rejection of IVIG? If IVIG didn't work, did they try something else and what was it? He mentioned other immune therapy but isn't sure that will be the way to go with what has happened with this. Whatever was in that IVIG my body just didn't want to play nice AT ALL. So advice???? I know I have to wait this out but I am feeling pretty miserable in combination with my normal P.O.T.S/Autonomic Neuropathy whatever in the heck it is that makes me faint several times a day. My BP has been so low... when I woke up today it was 65/52, lying down. I sit up to take it and it didn't even register on my monitor so I didn't even bother standing. Nothing has gotten any better, if anything I am worse... 12 days at Mayo and weeks at different hospitals have given me nothing but more questions. Thank you!!

Wow.. I am so sorry you girls have to deal with such severe spells such as this. I have never experienced the lack of recognition before. That much be so scary. I get a lot of waking up confused, or wondering why I am in a particular place. When I am typing, MANY times I will forget what I am saying or start typing things that I am hearing (people talking in the background, TV, etc) or everything looks like gibberish. I won't recognize letters or numbers. I have a hard time talking at times too... I have to speak slowly and I forget what I am talking about often, I can't recall words (I will KNOW what I want to say but my brain won't recall the word) or the opposite... I am talking and use the complete wrong word. If I read something, it is very common for me to completely forget everything I have just read. Your episodes DO sound like they are more amnesia related. I can't imagine. Mine seem more cognitive and I've attributed them to my multiple concussions (6 now) and not so much autonomic issues but who knows? I have extensive cognitive testing coming up so that may answer some of my questions. I sure hope you ladies are able to find something to help your symptoms. They sound terrifying! (((( HUGS))))) Jen

Thank you all so much for your caring replies. It does mean a LOT. FINALLY, at 5pm this evening I heard back from my Mayo neuro. I had already cancelled my infusion for tomorrow in case I didn't get to talk to him. I discussed my symptoms and he said that I could not continue with IVIG because my body is rejecting it, rather seriously. He said, unfortunately, my body will continue to fight what is in my body so I have several weeks of this to deal with before I start feeling better. I keep breaking out in awful cold sores (both lips and up on my face and nose.. just awful), headaches that I can't even explain, crazy changes in BP and HR- very abnormal for me... usually have low BP and high HR.... now I am having both high BP and really LOW HR and it changes constantly, flu like symptoms and body aches and chills. And I keep breaking out in hives and a rash, will last a day or so and then go away. Came back again tonight. Fabulous. So obviously IVIG was not my miracle cure. I won't pretend I am not disappointed. I was really hoping this was my answer...not only that but now I have nothing to try and have to wait until the end of March when he anticipates when all of the IVIG will be all out of my system before we come up with another plan. He says there are other immune therapy treatments to try but after my reaction to this one, we will have to be extra cautious. I try hard not to get too discouraged but my level of disability and debilitation right now is really drastically affecting my life- as you all well know how it feels. I guess I wanted an easy answer and there is no such thing. And he told me that I would probably be feeling pretty yucky as my body continues to rejects these antibodies in the IVIG and I am going have a rough few weeks until I get this out of my system. Oh, and the ONE good thing that I "thought" happened from the IVIG??? I had my ferritin levels (which have always been low- between 8-12) rise to 70! I thought that might be a good sign because it meant maybe I was absorbing iron. Well.. my Mayo doctor told me that he wished that the hospital would have sent him the copy of the test (this test was taken at my home hospital while in inpatient rehab after I left Mayo) because a large rise in Ferritin is NOT a good sign, but an indicator that the body is going through rejection. Plus, my hemoglobin and hematocrit dropped quite significantly as well which is also not a good sign. So I have to go in and get a huge lab panel to see if there was any "damage" done. He said that "MOST" of the time it is a pretty benign treatment that he wouldn't worry about it.. but in my case he needs to to get the testing because of the severity of my reactions and the abnormal blood results he has already seen. And he said, "Jen, I hate to say this, but if someone is going to have a problem with IVIG, it's going to be you." Thanks, NOW you tell me But, he did reassure me that it would be rare and most likely, all will be good. It is just a matter of getting it out of my system. Odds are I will be just fine as soon as it is all out of my system and then we move on to trying to find the next treatment.. but it is just another delay. But.. I keep telling myself.. I should be grateful to at least have the diagnosis when so many of us have doctors who won't even listen to us. One of the big problems I am facing is coordinating the care between these two hospitals. They are each taking tests, not sharing them and making decisions without being fully informed. I requested a Care Coordinator at my home hospital and I am also going to request one at Mayo... so that way there will be people on both sides who can hopefully make sure that all of my info is being shared with both facilities. If my last labwork would have been shared with Mayo 2 weeks ago, I never would have had to go through the last 2 miserable IVIG infusions and gotten as sick as I did... very close to anaphylaxis... could hardly breathe and severe facial flushing and dangerously high BP, not to mention the miserable full body rash and hives and cold sores.. because the Mayo doctor would have recognized the abnormal blood results and stopped it immediately. I hope that helps prevent such things in the future. So now I wait patiently for Plan B! Can't wait to find out what is up his sleeve next time. He did tell me he would be doing lots of researching and thinking about the next option for me and not to give up because he isn't giving up on me. That helped me feel better and of course I will never give up on trying to get my life back. Even on bad days, I count my many blessings and realize how much I have to fight for Thanks everyone again for your support! Jen

Issie, I go to the Mayo in Rochestor. I found both of the Endo doctors who saw me to be very condescending and not all that helpful. I was surprised that they responded with "Thyroid Sickness" but I guess also relieved at the time because I was inpatient there and dealing with so many issues I was okay with thinking: "Okay, at least I can check that off my list!" But my TSH thyroid levels have went from a .68 to a .05 in less than 6 months but my T3 and T4 levels show HYPOthyroid. But they felt my thyroid and said it was small, no goiter and my symptoms don't fit hyperthyroid so there was nothing to worry about and I shouldn't be "obsessing" about my thyroid. Well, I wasn't the one obsessing- I mentioned my levels at the ER as they were asking my history as I have a strong family history of thyroid disease- paternal grandfather had his removed, my dad has hyperthyroid, and my paternal aunt has Graves Disease. So a drastic change in my thyroid level TSH I think bears mentioning when they are asking about my history???? Apparently the ER doctor thought so because HE ordered the consult for them to see me. I wasn't obsessing about a thing. I think I will follow up at home. Mayo is great with some things, but there are definitely other things that could use some changing, like most medical facilities. Where do you go, Issie? Jen

UGH!! WOW.. what a topic! If I hear the words "beyond my expertise" one more time I might start screaming. I have heard this from so many doctors in the last six months (at least 10) and THREE were neurologists and one a top cardiologist at a major medical center. Even at Mayo, I got my diagnosis, but don't have a treatment plan that will help me. They labeled me as a "Medical Enigma" (actually put it in my MEDICAL record). They aren't giving up on me but there are no answers yet. I understand that not all doctors understand our condition, but the ones that don't should have the obligation to review our records and do the bare minimum of research to at least TRY to treat us for whatever reason. Can you really think of any other illnesses where doctors would just write off a patient because they just don't "understand" the condition? Doctors have just as much access to the internet and research as we do, but yet we are the ones doing all the research and trying to find the answers. I have had 6 concussions in just a few months. My cognitive skills have changed and I don't have the ability to retain what I need to be able to interpret a lot of what I read. When I think of the amount of money that these doctors have made on me in the last six months, it is shocking to me at times at the lack of caring, interest, and follow up that I get from some doctors. NO other profession would get away with being paid that amount of money without fully providing the service and providing a satisfying result, right? This is not to say I haven't found good doctors. I am fortunate to have 3. One is at Mayo, my neurologist, but he is very difficult to get in contact with. If I have a question, it is a week before I can talk to him if I am luckly. I have two at my home hospital: One is my Family Practice doctor who pretty much got my P.O.T.S diagnosis dumped in her lap when the cardiologist didn't want to handle it. She had never treated a patient with it and had only heard of it in passing and knew almost nothing about it. To be honest, we learned together after the last several months. My appts. would consist of going over research we both had done and trial and error. She spent a lot of her own time researching and learning. And she was always willing to take my suggestions when I would say "This isn't working so great" or "This sounds like something that may work"... She would always say "Let's give it a try" if we found from a reputable source (usually Dinet) that it was an approved treatment. The other doctor is an electrophysiologist cardiologist who has helped me so much. My family doctor fought with cardiology dept and demanded I have a specialist to see as well and also demanded that it NOT be a regular cardiologist so I see the only EP we have on staff.. and he is amazing. He has never dealt with anyone with my severity but he has been wonderful about getting me into the places I need to go (such as Mayo) and following up with me, keeping tabs on me (he calls me every two weeks at home on my cell). But other than those two, I could NOT agree with you MORE. Most of the doctors I see want nothing to do with me and take no interest on making me better but just getting me out of their office. I am demanding right now that a written protocol be in place for our ER to have on hand with how to handle a Dysautonomia patient. Usually, when I have had to go in, it has been after a syncopal spell with a head injury so obviously I need stiches/staples but what else???? BP needs to be monitored, heart rate, fluids, blood tests, etc. Right now even ER doctors are clueless with how to deal with me. I had one DR in an ER put 13 staples in my head after a syncopal spell when I split the back of my head open after falling on a floor, so obviously a major head impact. Even though I was unconscious, I can still somehow hear the sound of my head hitting the floor, bouncing, and hitting again. He could hardly see the split because my hair was covered in blood so he just did his best guess. Refused to do a CT scan. Refused to give me fluids. Refused to do my BP. I asked if I could do orthostatics before I went home so I could know how stable I was. No, he refused. He told me "I know what will happen. You will stand up and faint again and get blood all over MY floor." WOW. Just told me that his job is to stabilize me and not to cure me. Did not even check for concussion. In fact, I had been there 10 days before with another lacertion in the head and concussion so I asked them to take to staples out at least. They did that, at least for the most part (although later that afternoon we found that they left 4 in and another 3 were left in my hair because they couldn't find them because my hair was so bloody from that days injury). My husband was so furious that I thought they were going to have an altercation so we left and went to the ER at the hospital at the other end of town. Within 45 minutes, I was admitted in the hospital and stayed there for 5 days. I was never asking him to cure me. I just wanted him to make sure I was safe to go home. Compassion? None. I have to say that some of the doctors I have had the misfortune of dealing with have made me doubt how safe I am at times in their care. That is a scary feeling. SOMEONE needs to make it a priority that this condition is studied more and every hospital has someone who can at least safely stabilize someone in our condition and not look at us like we are crazy when we mention our diagnosis!!! Jen

I did ask the Endocrinology team about that at Mayo but the dismissed me very quickly without further tests as Eurothyroid Sickness. Although, an endocrinologist at my home hospital has seen my labs and wants to investigate further so maybe it would warrant looking further into? I guess I just made the assumption that they knew what they were talking about but a second opinion is a good idea. Thank you much, Sue for taking the time to mention that to me.

I took this drug while inpatient at Mayo and I personally responded very poorly. It raised my blood pressure WAY too high- I had a 190/130 with a HR of 39 or something like that. Then when the nurse went ahead with the orthostatics- sitting dropped 40 points with an increase in HR and standing another 50 points with a HR of 180. It also caused a horrible headache (which of course could have been the BP when my body is used to 80/60 or 90/70 BP ) and some other strange side effects, none unfortunately were eurphoria or anything of the sort. In fact, I was not very nice at all and extremely crabby and it also caused horrible adrenal surges (or that could have been a coincidence). I was curled up in the hospital bed for 30 min. waiting for the doctor to come talk to me, sobbing hysterically because the nurse was trying to tell me what progress this was because I didn't faint while standing. But I was shaking uncontrollably, teeth chattering and in a cold, clammy sweat. I also take Florinef and Midodrine so it could be that I am just on too many drugs to raise my BP and the doctor strongly advised me to think about stopping one of the others and staying with the Mestonin because it obviously worked at raising my BP but emotionally, I just could never bring myself to take that drug again after that horrrible reaction. In theory, I see his point and he MAY be right, but I don't know that I could ever put that in my system again. ALL of that said, I have heard of many people that it has worked out great for and I truly pray you are one of those!!! Sometimes, each of us has our own wonder drug that will really help our symptoms... (although not nearly enough of us, right??? ) Maybe this is yours! I sure hope so!

Frustating, frustrating... Ugh. While I was inpatient at Mayo I had my first 5 doses of IVIG (which were not "full" doses) after my diagnosis of Autoimmune Mediated Autonomic Neuropathy. I was given the usual warnings, 50/50 chance of success, yada yada. My first doses were not "terrible" but I had immediate headaches (like migraine type) and full body aches, flu like symptoms. Throughout the entire infusion my BP kept getting higher and higher and they would always have to slow down the rate as it would get incredibly high (180/130 HR of 42 was the highest I recall). This is VERY high for me. My usual BP lying down is 80/60 so I am sure my headache was made worse by this. Slowing the rate of the transfusion helped the BP a little but it still stayed quite elevated. But other than those fairly typical effects, nothing else happened that can think of. I was pre-treated with Tylenol and Benadryl. My first weekly treatment I was still inpatient but had been transferred to my home hospital. This was a higher dose than the initial 5 IVIG doses. Because I was inpatient they did not raise the dose at all, just let it run at the slow rate. I could tell the first moment the drip went in... headaches and body aches right away. This time I could actually "feel" it in my veins. Almost like a burning feeling but really cold (which seems impossible but the only way I can describe it). I had been up the entire night before for some reason so I was able to sleep through a lot of it but my headache kept waking me. Same with the aching. BP was still high but during the treatment nothing really seemed different except the feeling in my veins. The two things that changed is that my legs got red and swollen but attributed it to the achiness. The other is that I noticed a lot of shortness of breath. Well, that is one of my daily symptoms anyway and I couldn't tell if it was worse than usual. About 3 hours after the infusion I developed a rash and hives. More Benadryl and a doctor came to see me and said these are typical reactions. Last week I had my weekly treatment. This time outpatient (because thankfully I was FINALLY released from the hospital!!!! YAY). This time everything else stayed the same. High BP, headaches, body aches, the feeling in my veins, same feeling in my legs: red and swollen and very hot to touch. This time though when the nurse came in after the first 5 min. of infusion she said my face was bright red like I had a sunburn. Alarmingly so. I also struggled with my breathing. The nurse called the ordering doctor (who just ordered based on Mayo's orders and has NO knowledge or experience with IVIG) and he said I needed to see an allergist before my next treatment. I did continue with the rest of the infusion because the doctor instructed her to but she had to stay in with me the whole time and if anything changed to stop immediately and lowered the dose as low as possible. Her opinion was that my body is rejecting the IVIG and that each reaction is getting worse and she is afraid that my next one will be anaphylactic. She said she has given IVIG hundreds of times and these side effects were very worrisome for her and was uncomfortable even continuing. Fast forward to today. Saw the allergist today, which I was not sure about. What would he know about any of my conditions???? He does prescribe IVIG all the time. So when he went over my reactions his initial response is that they are making me miserable. He knows very little about autonomic dysfunction but he knows what it is... but he says that IVIG is really only approved by the FDA as effective if they know exactly what they are replacing which in my case they don't because the test hasn't came back yet with what kind of autoimmune issue I have.. and very likely won't be able to answer that question anyway. Less than 50/50 chance I was told. He said that it appears my body is rejecting this treatment and in his experience won't help me based on this info. I developed a terrible cold sore outbreak on my lips, top and bottom and toward my nose. He said he COULD treat me with a steriod such as predisone which they have not tried to help with the side effects... but he said that the dose he would have to give me would be so high to control my severe effects that he would be afraid of how I would react and that he personally would not order it without assistance for another doctor. He thought it could cause severe hallucinations, erratic behavior and other unpredictable behavior that he wasn't sure how it would affect my other illnesses- such as my autonomic problems, adrenal surges, Post Concussion Syndrome (I have had 6 concussions and four within the last 4 months). His recommendation was to stop treatment because their first rule of care is "Do no Harm". I have tried all week since last week to talk to my neuro doctor at Mayo without success. I tried again this afternoon. STILL have not talked to him. I am trying to get a Care Coordinator so there is someone who can communicate these issues because the hospital that I am currently at does not specialize or having anyone who deals with my complex issues, that is why I went to Mayo in the first place but NO ONE is communicating with anyone. SOOOO... I am supposed to have my next IVIG on Thursday and I don't know what to do. My Mayo doctor won't get back to me. I spend 4 days out of 7 even more sick than I normally am because of these treatments... and IF they HELP ME I am all for it. But if my body is rejecting them what is the point???? I also don't want to have an anaphylactic reaction next as I have been told several times is a strong possibility. I just really wish that SOMETHING would go easy. I am completely unsure about what to do. I don't want to abandon the plan that we made at Mayo but he isn't getting back to me. I asked about changing brands but that isn't an option in my area. Apparently, the brand I am using is the most used and safest one (Gammamax or something like that???) These Mayo doctors are impossible to talk to and I am getting frustrated. ANY ADVICE?????? Has anyone had side effects such as these while getting IVIG? Does it seem like my body is not responding as it should? The only positive change I have seen is a large increase in my Ferritin levels. However, my last blood test the other day showed a significant drop in my hemoglobin and hematocrit. Also, my BP has been ALL over the place since this started as well as my HR. I have always had predictable orthostatic hypotension. Now, sometimes my BP is very high and pulse low (it has gotten as low in the 30s or 40s) and other times back to my normal really low BP numbers. No matter what my BP is the orthostatics hasn't changed. I still have at least a 30 point drop from lying to sitting and another 30 point drop from sitting to standing. HR changes as well as before. What would you do in my situation????? Thank you!!! Jen

I don't know if I would describe mine as being a thyroid problem, per se, although I am hyperthyroid technically. My TSH is .05. But my T3 and T4 indicate that I am HYPOthyroid. Nothing makes sense. The endo doctors at Mayo diagnosed me with eurthyroid sickness. They explained that there is really nothing wrong with my thyroid itself, but sometimes chronically ill patients will get abnormal readings but the thyroid is reacting to the illness and it isn't a problem with the thyroid itself. I have to go in every 3 months right now to check my levels. The problem is related to my primary illness, not my thyroid. I am not on any thyroid treatment and at this point, they don't anticipate I will have to. I haven't studied a lot about it yet. I guess because it was one of my lesser diagnosis and they told me it was not a huge concern but I should look into it more, so I don't really know a lot about it. I guess all I really know is that my thyroid is "fine" but just reacting to my autonomic problems. Jen

I wonder WHY there is such a difference in the doctors' understanding then? I was actually quite surprised at Mayo when they looked and treated me like I was crazy when I brought up my hypermobility. It was like "Yeah, what's your point????" I was taken aback and started babbling about the relation and was bluntly told there is NO connection. Like I said, I kept bringing it up (I was persistent) but it got to be contentious so I had to let it go. But I was thinking... aren't there journal articles or SOMETHING that has documented this? And this is Mayo! I would think they would know as they kept telling me repeatedly how they are the top in the world for autonomic dysfunction. Quite frustrating.

Thank you for all of your input, about IVIG and EDS. The main reason I am so concerned is my 13 year old, Savannah. She is SOOO much like me. She displays many of the autoimmune traits I had at that age as well (would catch any weird thing that came along, inability to have a fever or IF she gets one it is always very low.. normal body temp is below 97.5 at least (never has had one over 99), very hypermobile and hyperextendable joints, exercise intolerance, gets overheated easily, legs and feet upon standing or sitting become purple/red, dusky and mottled, HUGE pupils that stay huge all the time with one bigger than the other just like mine, and has already had 4 syncopal spells that can't be explained by weather, needles, or anything) It just seems like too much of a coincidence that she has so many of the symptoms I have and have had most of my life. But even the doctors at Mayo did not believe there was any reason to put her through any testing. I will watch her very closely and at least when I recognize the first serious symptom or her next syncopal spell I will know what to do and hopefully will not have to go through what most of us have had to endure to get a diagnosis. I pray that she never develops this and it IS a coincidence and she can live a normal and healthy life.. I wouldn't wish this on a soul, let alone my precious daughter. I guess I was just annoyed that they totally dismissed me trying to connect the EDS with POTS. I mention that the hypermobility can lead to "hypermobile" type of veins where they veins don't constrict as they should. The genetic counselor and the other doctors looked at me like I was crazy and one actually mentioned that I was "obsessed" and I needed to let it go because there were no easy answers to my situation. I just kept repeating how worried I was about my daughter and the same doctor told me that I had enough to worry about with myself and my daughter was not the patient. I realized I wasn't going to get anywhere so I decided I would continue to research and made notes of every single comment they made to me about it. Once they finally examined my joints (after 7 days!!!!!!) they finally made a note on my charts about the hypermobility/hyperextendable joints... the doctor actually dislocated my right knee as he was testing the stability. HELLO? Believe me now? Then I had to do all the tests which of course I could do all of them. All he would say is "Yeah, you are flexible but it has nothing to do with your autonomic problems." OKAY... whatever. But I so wanted to prove them wrong but I let it go. It was not getting me anywhere and I realized that it was starting to cause an issue with the doctors so I recognized that the immediate goal of treating me was getting compromised. But if (and I pray it is an "IF") she begins to show more signs and symptoms then I will do whatever I have to do to get her help as soon as I can possibly get her there. Jen

I am glad I am not alone (not that I want any of you dealing with it either... but I guess I feel a little less scared) Until VERY recently... I was very typical orthostatic hypotensive. Lying down, perfectly normal. HR 65-85 and BP 90/70 or 100/80 and felt fine. Over this last week but BP has been ALL over the place. I've had it as high as 175/120 with my HR at 39. That is lying down. So I sit up to check it... it drops to 100/80 and HR goes up to 140. I don't even try standing with a 75 point drop in BP. Periodically, I check my pulse lying down and it has been in the 30's thru 50's. This has NEVER been the case. I have always just had the orthostatic changes (which are quite dramatic) but always low, low, BP and tachycardia. These low HR are totally new in the last week. Then I checked my BP a little bit ago, lying down and it was 72/44 with a pulse of 39???? I sat up to check it and my monitor couldn't detect my BP but my wrist monitor said my pulse was 105. I am beyond confused. I am attributing to a side effect of my iVIG infusions but have also been thinking about talking to my doctor but after spending the last several weeks in the hospital I can't even BEGIN to think about going back..... Any input would be great!

I am so sorry. I just want to hug you. I am not sure about advice because I am going through the same thing and unsure how to handle everything. I have six children ages 15 (the oldest) to 8 the baby. It has changed ALL of our lives. It look me two weeks to convince my 8 year old that when I would have syncope I wasn't dead. I have a lot of syncope and unfortunately a lot of injuries. The most traumatic thing the witnessed happened on the morning before Thanksgiving. My hubby was gone and I was trying to make my bed and I had a syncopal spell and my bathroom door was open and even though I was not conscious I can still hear the sound of my head hitting the floor and then bouncing and hitting it again (we have linoleum over concrete- its a basement bedroom). I think the actual impact kept me unconscious a little longer than usual because when I was coming to, my 11 year old son was down there because he heard the crash. I touched my head and I was bleeding so badly and he was crying and so scared. He yelled to his sisters to call 911 and Dad and called his older brother to come down... I was still very much out of it and he was asking me questions that I couldn't answer. Both boys were covered in blood and it was awful. Then my 11 year old told his brother "If we lift her up, just enough, I think we will lower her blood pressure enough to stop the bleeding... You apply lots of pressure to the cut and I will lift her up.." so they did and within about a minute the bleeding clotted. I truly believe those boys saved my life. But my poor girls- only the 10 year old daughter was in hysterics. I will ever forget the look on her face. And my 8 year old daughter was white as a ghost and just sat there, covered in blood, holding my hand. I know it isn't my fault, per se, but I will never forgive myself for putting them through that. I wasn't feeling great and making my bed was not that important. I have talked to counselors and therapists about how to help them and have gotten mixed answers. Some have said it may make it worse for them to relive it. Others have said that they may need to talk about it. None of them will ever discuss it with me much at all. There are so many different factors we face with this illness, that it kills me that they have to see even the small parts... but something like that. Will it haunt them forever? It still haunts ME and I was mostly unconscious through it but I STILL hear the sound of my head hitting the floor... and getting to the hospital to find out that I had my 6th concussion was devastating. That was the day my denial ended. Sorry I hijacked your thread. I wish I had some answers for you. Do you have a church family? Maybe talking to her Pastor may help? A therapist couldn't hurt anything unless she has a phobia about something like that. A close family member she feels comfortable confiding in. I have learned with all of my kids that they will NOT confide in me about anything they are feeling because they don't want me feeling guilty. I wonder if there is a support group/online forum for kids with parents who have POTS? Maybe we could look into starting something like that? That could be super helpful for them. To be able to relate to other kids who deal with this. It breaks my heart that many of us have kids who live with this just as much as we do. My prayers are with you and your daughter. And I have a 13 year old daughter too. If you would like, I am sure that my 13 year old would love to talk to you so maybe we could PM each other after talking to them and seeing if maybe they would like to communicate a little bit with each other and compare some notes and help each other through it. Just throwing out some ideas. Your thread came at a perfect time because I have been really struggling what to do with my own kids. I have basically been in the hospital from the day before Thanskgiving until New Years so that was a whole other struggle as well. I don't want to ignore their mental health and feelings at the expense of my physical help so I am open to any suggestions at all. I will tell you of all the kids, I have noticed the biggest change, personality wise, in my 13 year old daughter. She has always been a straight A student and last quarter she has half A's and B's. I know, not terrible, but not typical. She is moody and crabby. I know it could be puberty too but the situation in our home isn't helping. Maybe all of us working together in the forum can try to focus on ways to help our kids get through this too. It breaks my heart and fills me with guilt (which is useless when I don't do anything about it) that I am putting them through this. I am their mother. I am supposed to be taking care of them, not the other way around. Love, prayers and hugs!!! Jen

Julie, I am so happy for you. Not that you have autoimmune mediated dysfunction but that you have answers. And you FINALLY found someone to listen to you!!!! I went to Mayo in Rochester last month and received almost the exact diagnosis. Mayo sent me home with discharge orders for IVIG and my hospital had no problem following them. And now you have a different diagnosis than just P.O.T.S but an autoimmune disorder not to mention autonomic dysfunction. Did they tell you that they were certain the two were combined? The doctor I saw in Rochester said that he couldn't be SURE that the two were related but it was very likely. I tested positive for the initial test they do for autoimmune deficiency but there is another test that we are still waiting for which COULD give me the nature of the autoimmune problem or could not. I was also given a 50/50 chance of the IVIG working. So far, side effects have been hard but was told that I should expect that I would not see major improvement until the full course was completed. It seems the further advanced it is, the longer it takes (which makes sense) because my autonomic dysfunction neuropathy was one of the worst they had seen in some time. Sounds like we had a lot in common!!!! I am just so happy to hear you have some answers, Julie. My 12 days inpatient at Mayo were difficult (human pincushion) but life changing. I finally feel like even if I live with it for the rest of my life, there are people who will treat me, listen to me, and understand that I am not somone with panic attacks and anxiety looking for attention. I am chronically ill. AND I do have a chance of recovery. All of my symptoms (as I am sure yours are as well) were random, and seemed to make no sense to anyone at all.. but Mayo was able to put "most" of the pieces together. They did put in my discharge notes that there are many things going on in my body that they haven't figured out yet but they aren't giving up and they referred to me as a "medical enigma" lol which is no shock to me... but I have a start and a plan. HUGE (((((( HUGS ))))))) to you and I wish I could hug your doctor too. Just to be treated with dignity and respect instead of disbelief and scorn is a blessing. I know that once I am able to work again which I really hope I can, I plan on working toward being an advocate for patient like all of us on this forum who have to go through not only the suffering of such a body encompassing illness but a medical community who has not decided that this is an issue that needs to be focused on and studied EVERYWHERE, not just specialty hospital. There should be a protocol in every hospital with the very basics to deal with this until we can get somewhere with the knowledge and testing to really help. NO ONE should have to go through this. You have MADE my day because you've been in my thoughts and I know how discouraged you have been. I pray this is a beginning of a brand new life for you!!!!!!!!! Jen

Thank you Arizona!! I DO think I am on the low IGA.. not sure of the brand. I am definitely checking out that website tomorrow. I am not sure how well I am doing on it. The ONE good thing is that my Ferritin went from 8 or 10 to 70 after my initial five doses I was given inpatient. This seemed impossible to me. I have always felt "anemic" but hemoglobin and hematocit was always normal. Just the low Ferritin. Well, this blood test NOW says I am technically anemic because now my hemoglobin and hematocit are both low. Hemoglobin went down, not a lot... was 14 last month now about 9.6 I think? Hematocrit had dropped about 8 points which isn't huge but still a drop. I don't know if these are normal with IVIG or not. I don't tolerate the IVIG well though. My blood pressure gets really high. Normal BP for me is about 90/70 or 80/60 which I know is low but its always been that way. When I get the IVIG it gets really high- the highest so far was 190/135 which for my body was crazy. And my pulse was REALLY low, like 41. They stopped it because of my effects. Called my Mayo neuro and said that he expected this and that I would have difficulty with it becuase of the severity of my AN and he really wanted to continue treatment so they were not to increase the dose at all. Just let it run the same rate the whole time and see how that went. That night I ended up with a horrible rash. Last Thursday I had my next dose and the same thing happened- BP rise (not as high but still 168/125 which is still high for me. And most concerning to the infusion nurse was when I arrived I was my usual paper white pale self and within 30 min in my face was bright red, like I had a horrible sunburn. They called again and an allergist came to see me and my rash and hives were developing and he said that he was afraid this was the final step before an anaphylactic reaction. So, he called my Mayo doc who still wants me taking it with constant monitoring. So the pharmacy is looking for a new brand to see if that helps. The only "benefit" has been the Ferritin rise, which is good but my autonomic symptoms are not any better as of yet. And the treatments make me so sick. I have a horrible headache, a migraine type one which is excruciating for the rest of the day (I am sure made worse by the drastic rise in my BP) and I feel like I have flu like symptoms the next day. My whole body just hurts, even more than usual which is significant enough as it is. I can't eat. I've had to go in for saline the last 2 weeks the day after because of syncope and dehydration. Just no fun. If it works, then of course it is worth it. but I guess I need more info and I will definitely be looking into that. Why is it that the low IGA would not work? I did talk to a doctor friend of mine who doesn't treat me or anything, but he said that the high fever when I was a baby could have basically "broken" my thermostat and now I am unable to get fevers but mostly attributes it to my autoimmine dysfunction. I feel the same way, it is rare that I would EVER get past 98. anything but if I am at a 99.0 even I feel like I have a raging fever. I am ALWAYS freezing. ALL the time. I have no ability to regulate my temperature. I struggle with hot weather too, mainly because of blood pooling and overheating. My face turns red easily and I don't really sweat ever so I am prone to heat exhaustion. Thanks for your advice! I am going to research that website tomorrow and see what I can find out. I feel a little silly because I am no where near as educated as all of you in this disease and I just went along with a lot of things at Mayo without asking enough questions. Not to make excuses, but I was so ill and was having some organ shutdown and hardly remember most of the weeks I was there. I also received another pretty bad concussion while there (3rd in 3 weeks) from a fall after syncope and my brain is still not recovered. This is concussion number 6 or 7 and definitely can feel the cognitive change after this last one. Scariest thing of all for me. Jen

Something I forgot to mention... the horrible headaches. These are almost a constant for me, every day and I have yet to find anything to relieve them. It is so miserable and the thought of a lifetime of these is not appealing. Another thing I've noticed- my mood! I am slightly quicker to be irritated and will snap at someone faster than I would have in the past. I was always the type to really think through a response before I would say it now, but now if someone says something that annoys me I am much more likely to snap right back. So I guess it has also changed my personality to an extent because I used to be SOOOOOO easy going and now I am just a little bit more high strung. Noises bother me so much more. Bright light, any extra stimulus. I try to keep this in check but sometimes I just can't control it. My poor family, bad enough they have to deal with all of the autonomic issues and now this! Jen

Hi Everyone, I have had a diagnosis of post-concussion syndrome for some time. After I left inpatient at Mayo I spent a week and a half or so at an acute inpatient rehab. Not to "cure" but help me develop some safety skills because of my frequent and daily syncope. I met with a cognitive specialist and speech therapist and they determined that I had "Mild Cognitive Impairment" which I was not at all happy about. She said that were a few clues that led them to this dx. First the gait of my speech. I guess I talk a lot slower than most people and with frequent stops to search for the right word (I KNOW the word but it take my brain a little longer to find it). My immediate family has commented that they have noticed a change in speech pattern since my last concussion. Also, my retention has really suffered. I am a grad school student (online thankfully) and halfway done and totally determined to finish (why, not sure, I will probably be on disability for a long time but it is a pride thing I guess It used to be I'd read something once, remember it and get my work done quickly and ahead of time. Now I procrastinate horribly and I don't retain anything I read. I am constantly referring back to the book and it has doubled my time at leasst for completing assignments. FRUSTRATING! I think I procrastinate because of that reason. I hate to accept what has happened to me. I am in denial to an extent. So while in rehab, the most important thing they stressed to me is they want me to go 3-6 months (well, forever optimially of course) without any concussions because my brain is really healing. I have had six concussions and many of them have been within the last few months. And I am sure all of the syncope and lack of oxygen for even a few seconds hasn't helped either. I was a little scared by the importance they were placing on this. They indicated that six concussions is not an acceptable number, especially so close together because the brain has not healed from the last one, and another one could be "disasterous" for. This really scared me. My question, for those of you with syncope and concussions... how many have you had and do you think you've had a cognitive change from them? I guess I never really thought about 6 being such a high number so I am curious to see what others have. Is there "brain rehab" to bring back some of those skills? We didnt really go into that but I see her next week for a follow up. I felt like she was telling me I had brain damage and that is some serious and scary stuff... and my syncope is very frequent (multiple times a day) so to be safe for the next few months I won't be walking much. Thanks for any insight. Just another issue to have to deal with with autonomic neuropathy that really isn't related directly but a side effect, as if we need anymore!! Jen

I struggled with this for MONTHS!!! I am fortunate enough to have a wonderful family doctor who has been seeing me for years and was literally watching me deteriorate before her eyes. She wasn't willing to write it off a anxiety. I had some syncope and shortness of breath right at the beginning of this flare so she ordered a Holter monitor which came back showing tachycardia. She referred me to a cardiologist who was completely useless. He said, "Yeah, you faint and have tachycarda. Put me on a Beta Blocker (great idea with my low blood pressure genius!) and sent me on my way. I kept getting worse so she said I needed to see him again for a TTT but she couldn't order one. He was extremely resistant to order it but did. Came back positive for POTS. He decided to send me to a neurologist who was even MORE clueless if possible. To be honest, I don't think he has even heard of autonomic dysfunction. He did the typical neuro tests and said that I had severe balance issues, very large pupils and very high arches but nothing that indicated a problem. He dismissed me as healthy. I went back to my family doctor and we started really studying the disease. She had HEARD of it at least but knew nothing about it. She consulted with a specialist and spent a lot of her own time researching and I came in weekly and we would compare notes and do lots of trial and error with different meds. She is always available for questions via home email or I leave a message at her office. She referred me to an electro physiologist cardio doc in our system who ended up between absolutely wonderful. He actually LISTENED to me. He took one look at me and said "You are a very sick young lady." Not really what I wanted to hear, but better than "Why are you here? You're fine!" He looked at my TTT again and asked why cardio had ignored the POTS dx.. I said he didn't really ignored it but just said it wasn't a serious illness and I didn't need a doctor to handle it. I needed exercise, salt and fluid and I would be fine in a month. Yeah, right, if only. Well, luckily my EP said that was crazy and consulted with my family doctor and ended up getting me to a specialist and then to Mayo right in time as organs were shutting down. I consider myself one of the lucky ones. At least I had TWO doctor listen to me. I think what saved me besides the positive TTT is that I have very orthostatic BP (I know, not really a POTS symptom but still) and that is hard to hide in a doctors office when they do the orthostatic tests. It was obvious something was wrong. Can't count the syncopal spells I had on the floor of an exam room. I would think someone really struggling with POTS without obvious symptoms in the exam would have a much harder time and it just is not fair. We deserve to be taken seriously without just being given an anti- anxiety drug and sent on our way. Jen

I never really feel relaxed unless I am lying down when I usually have very few symptoms. If I am sitting or standing (which is rare due to the frequency of syncope). The only time that I would say that lying down poses more symptoms of not being relaxed or making me anxious is an adrenal surge.. this happens to me quite often at night in bed and that is definitely NOT relaxing.

Interesting now many of us have had symptoms since childhood and how it has progressed since. Does anyone notice that each "flare" seems worse than the previous one? In my case, that seems to be the case. The flares last longer and get more severe. This one I am currently in (which I PRAY is just a flare and not a life sentence) has definitely been the worst by far by 100%. So far it has gone on since April but has progressed from "mild" to extremely severe in that time. DO any of you find that this happens with you or are most of your flares the same?

Thanks so much!! I think you are right. My mom told me today that I had one high fever at 6 months old. I had developed a very rare strain of influenza- not sure but I was born in 1974 and I guess there were some rare strains going on. My parents told me I was completely unresponsive aned by the time I got to the hospital I had a fever of 106.8. I stayed unresponsive, almost catatonic the entire time I was in the ER and they admitted me and I was in the hospital. They struggled for days to get my fever down and most of that time I remained in that strange state. After day 7 I guess my fever finally broke and I finally started to improve. The moral to the story is that according to my mom she doesn't remember me ever getting a fever after that. I actually had chicken pox 3 times- all three times without a fever. The first time it was a very severe case with internal blisters and I was very sick (I was 8) for over 4 weeks... but never a fever. Had a mild case in my mid-teens, still no fever. In my early twenties, I got it again, again this one was another serious case and I was very, very sick as is usually the case as you get it as you get older. But again, no fever. I can only remember once that I had one with another flu case several years ago and my influenza lasted close to three weeks without a fever and I was so sick. I actually had to be hospitalized. Finally, one night I toward the end of the third week I developed a fever of 99.7 in the middle of the night, fever broke after just a few hours and I started to improve. I think you're right. It is just how our bodies compensate. I am not sure why don't get fevers and it is frustrating at times because I feel like it is bad enough I am always having to "prove" myself to doctors to convince them of my severe diagosis (better now that it is documented by Mayo) but whenever I go into the doctor for any infection I never have a fever or elevated white blood cells, or if they are very mildly so. It seems like they never believe me because I don't present classic symptoms and rarely believe that I don't get fevers. Why doctors do not treat us as independent individuals? I try to explain the autonomic / autoimmine issues but it seems to go right over their heads. I was just wondering if anyone had this experience but it is probaby another "Jen-ism" which means it is one of those symptoms that I have that doesn't fit in anywhere and makes no sense to anyone at all. Add it to the list Jen

This has gone on since I was a young child. My normal body temperature is anywhere from 96.5 to 97.1. Always has been. I can count on ONE hand with fingers left over the number of times I have had an actual "fever" over 99 degrees, no matter HOW sick I am. I have been diagnosed with an autoimmine deficeincy, tested positive for the polyclonal hypergammaglobulemia but we are still waiting for the more definite test to come back with the "official results" of what kind of disease it is. I have been told that there is a 50/50 chance of that test showing an actual "disease". If not... they just know I have an auto immune problem and they can't even be certain that that the auto immune problem is causing the autonomic problems. Sigh. What ARE you sure of????? (This is all at Mayo). My question, could the fact that I do not get fevers be related to either of those factors- autonomic or autoimmine? I am not sure which would affect it? I had doctors telling me that it is great that I don't get fevers because my body is doing its job but somehow that doesn't seem right to me considering how sick I have been at times and how long it takes to recover. Quick example, last year I had acute appendicitis- when they took it out it was about 80% toward rupture so it was very advanced and I had been sick a while. My temp right before surgery was 97.1. In fact, I had doctors questioning the dx at all because I had NO fever which just doesn't happen with advanced appendicitis and they looked at my white cell count which was only "slightly" elevated but not by much... it was basically exploratory surgery because my pain was consistent for it but they just weren't sure (and I think didn't believe me and were shocked to find an almost ruptured appendix). So am I lucky to not get fevers or is this something that has to do with my compromised immune or autonomic system. It seems that a fever would be a good thing because it helps fight off infections, which my body does a poor job of doing (I have been documented to have had chicken pox 3 times, all three times.. NO fever). Just not sure why I can't get a doctor to agree that the fever issue is an issue at all. Thanks for any input! Jen

After thinking about it, I have had symptoms most of my life. According to my parents, whenever I would stand or legs would dangle, my legs and feet would get very purplish red/mottled. I had my first syncopal spell at around 11 or 12. Those would happen periodically, monthly maybe? I went to a doctor who just said that some people who get up too fast will faint and there are those who are prone to fainting. Keep in mind, this is 25 years ago as I am now 37. I lived in a very small town without the greatest health care. I am extremely hypermobile with hyperextendible joints and at the age of 14 just running into the dugout at the end of an inning at a softball game my ankle slightly turned and I fell. I felt unstable but wasn't in a lot of pain. Come to find out an hour later, as I was in complete shock, when I arrived at the hospital I had completely severed all four ligaments in my knee. That was a whole separate ordeal that took 6 surgeries to fix in 3 years. Each time I had anesthesia I really struggled, right afterward in the hospital because my BP would get so low and stay that way (usually causing me an additional 4 days inpatient at least) and then it seemed to take me forever to snap out of it. I was always prone to shaking, hands, feets, sudden loss of strength, never had a brain freeze (which is a kind of funny "symptom" but one of the doctors I saw at Mayo said that is related to autonomic dysfuntion because for some people that nerve doesn't work properly to warn the brain of too much cold- funny enough my 11 year old son figured that out a month ago after lots of research on the computer I ALWAYS have huge pupils, to the point where people are always commenting on them. One is bigger than the other. VERY high arches, which my neuro doctor at Mayo said indicated neuro problems due to severity of how high they are. There are just a zillion little things that I have ALWAYS had my whole life but it was always one of those things that was just a "quirky Jen thing" as my family called it but no one ever thought anything was wrong with me. Yeah, I would faint and my heart would race, but I stood too fast. By the time I'd get to the doctor if I bothered to go, my BP was pretty stable. It wasn't until I got very sick many years later in my early 30's with glomular nephritis that I started to think there was something really wrong. That is a relatively rare disease in adults that occurs after a person gets strep throat, doesn't treat it, and the strep bacteria gets in the kidneys and causes kidney failure. Sure, I had a sore throat, no fever, but I was a mom and I had to go to work and I felt a little yucky but thought it was a minor cold. 4 weeks later I could put my shoes on. I looked at my legs and they were almost 3 times their normal size overnight. Or so it seemed. I weighed myself and I had gained 50 pounds since my last weight. I drove myself to an urgent care and they did all these tests and when I did a urine test my urine was a brownish red color. Not good. She sent me to the ER and said she would call with the results. She had someone pick me up to take me and on the way there she called and I was in kidney failure. Long story short, luckily it was an acute case, after about 4 horrid months and temp. dialysis I got better but that's when my first "severe" POTS flare started. It went on for about 3 months. The fainting, low BP, all of those other symptoms that go long with it. Then, I started to get better. But I also developed a pretty severe case of fibromyalgia after that and had a very high ANA. That, unfortunately has stayed with me, along with crippling fatigue that still plagues me. But I went back to work eventually and in 2008 had my next episode. Same thing, neuro illness (cluster headaches) and I was in the hospital and then it took about 2 months to get out of those (thankfully... WORST pain you could imagine- I get migraines but these are a whole different ball of wax). I spent the next 6 months in a flare... low BP, tachycardia, etc, etc, etc. What I have noticed throughout MY life anyway, is that the symptoms never go away completely but I become more functional for a bit. I am always prone to low BP, syncope, fatigue and many other symptoms but it is the flares that completely make me non functioning. Now, to where I am now and I won't go too much into it because lots of you know my story. But it started with an appendectomy on Dec. 31, 2011. Two months later, my "bad" knee(they are both bad now because of multiple dislocations and ligament tears due to my hypermobility- EDS) would not stay in place so we had to do another surgery. Both times, major struggles after anesthesia. My BP would not come up. About a week later, I had my first syncope episode with the current "flare" I am in and so far it has progressed to something that I would have never expected. Multiple head traumas from the six concussions I've had. Numerous daily syncopal episodes. VERY low BP, even sitting. Standing, forget it. Tachycardia which has increased over time. Bladder dysfunction. Thyroid dysfunction. Small fiber neuropathy. I was diagnosed at Mayo (finally) with immune mediated autonomic dysfunction neuropathy and one of the worst they had seen in some time. It look me less than 10 seconds to faint on the TTT. Couldn't even detect my blood pressure. I am on IVIG right now but that now sure how its going. There are pros and cons. So we will see. SOOOOO.... that is my story. I think I have had some form of autonomic dysfunction most of my life and an autoimmine problem most of my life as well. I was always the one getting the weird viruses that no one else would get. My infections lasted forever. So now my "complicated" medical history makes a little more sense but doesn't really answer any questions. In fact, my discharge papers at Mayo actually stated "Mrs. Glynn is a pleasant 37 year old woman with a very complicated medical history including (blah, blah, blah, mentioned some above) and has been diagnosed with numerous DX while in our care including immune mediated autonomic dysfunction but still continues to be quite the medical enigma to the medical staff." I had to laugh when I read that. What on earth do they mean by that??? Is that a compliment? Once I started getting some organ shut down things got very scary. I spent 12 days inpatient at Mayo and then was transferred for another 9 for acute inpatient rehab. Life changing, for certain. Interesting and frustration to go to doctor after doctor (even at Mayo) and STILL not have them be able to figure me out. ALL I want is a definite answer but it seems that there just may not be one. So that is my very long and complicated story but the short version would be I don't think I ever didn't have the symptoms to at least some degree, at least before age 6 or 7. Jen

Hi TLC's Mom, I just returned home after an almost 2 week inpatient stay at Mayo for severe autonomic dysfuntion neuropathy most likely autoimmune. It seems like you will be getting your testing outpatient. There are probably some things I can help you with but the inpatient and outpatient experiences are pretty different. Please feel free to ask specific questions if you have any or PM me if you would like. Some tests are more invasive than others but the odds are very good that you will leave with answers. One thing I suggest is keep a notebook with you at all times. You will see so many doctors and they are in and out so quickly. Make sure you are writing down notes as they talk and also any questions you need answered before you leave. I was given several new diagnosis' and I was pretty ill due to some organ shutdown so I did not really get a lot of my questions answered. Most of the time I was inpatient I was alone because my hubby was home with the kids. Be assertive and remember that YOU are the advocate and you and your child are the customer. Be polite and professional and you will get better results but you have every right to demand the answers you are paying for. Please ask for anything specific about tests! Jen