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Everything posted by sugartwin

  1. Hopefully someone else will weigh in. My background is not in the medical sciences, so this is the "quick and dirty" version. The nervous system is broken into central and peripheral and from there into the somatic (voluntary) and the autonomic (involuntary). EMG cannot detect damaged nerves in charge of the autonomic nervous system, only those in charge of the somatic nervous system. (I'm not sure why doctors rush to give EMGs to patients who are displaying purely autonomic symptoms, except for the fact that some disease, like Guillan-Barre damage both kinds of nerves. ) Because autonomic nerves lurk close to the skin's surface, a skin biopsy can diagnose this kind of neuropathy. However, this is not the cause of all dysautonomia, which is why I said the terms are not interchangeable. Not everyone who has dysautonomia has damaged autonomic nerves.
  2. Autonomic neuropathy is dysautonomia. But not all dysautonomia is necessarily autonomic neuropathy. As I understand it, autonomic neuropathy refers to actual damage to the nerves and by extension, usually quantifiable damage...gastroparesis counts, but irritable bowel would not. When my doctor found that my feet and part of my lower legs didn't sweat at all, he added 'autonomic neuropathy' to my chart.
  3. I have to agree with Dizzy. It is not a positive article but that does not mean it lacks value. Because it correlates with so many of our experiences it is evidence of a greater trend within medicine, a "dirty little secret" that needs to be brought to light. While people come to doctors naively, hoping for help and feeling the very real terror of experiencing strange symptoms, they are unaware that they might well be accused of faking their symptoms. Or of having a purely mental illness. Or of being lazy or having some sort of character failing. Or even worse, like the physical abuse I got while I was in a hospital in Chicago, based on a phony presumption of malingering. There was nothing I could do after this and I tried. I couldn't sue, I couldn't bring criminal charges nor could I even extract an honest apology. Even on this forum I can't name them without being redacted. They got away with it, in short. But it doesn't have to be that way and articles like this are a step in the right direction. It's not just us: people with EDS or POTS or celiac. On a whim I researched other rare disorders. Everyone has a doctor horror story!
  4. I can't tolerate decongestants either, but it sounds like it's time for some antibiotics if you aren't taking some already. Don't try to wait it out. I tried that with a sinus infection I had about a month ago. All I did was make the infection that much harder to get rid of of. Especially if you're running a temp.
  5. I agree with everyone else. It's not so much another thing as it is THE thing. When I was racking up diagnoses a couple years ago I felt like I was getting rained on...I wanted to know the name of the cloud that was raining all these diseases and syndromes on me. It turned out to be EDS. If you do have EDS or another, similar hereditary connective tissue disorder, then that would explain your shifty joints, your autonomic woes and perhaps even your autoimmune issues. More importantly there are baseline measurements that need to be taken: of bone density, of the aorta, etc. I know of a very good geneticist in the Cleveland area or Dr. Grubb might be able to refer you to diagnosing geneticist. Very few doctors outside of geneticists, at least in this country, are good at recognizing and diagnosing EDS.
  6. I learned from my blood volume test that I pool pretty badly. As soon as I start to sit up, my blood starts heading toward my feet. I also have some nerve damage though, so it's not clear to me whether EDS or the nerve damage is more responsible for my severe pooling. Like Chaos said, no one knows for sure exactly why EDS and dysautonomia go together. There are six types of EDS. Of the three most common (Hypermobility, Classical and Vascular) only Vascular has a blood test that is a close to 100% certain. For Classical, only 50% of people will have a mutation. For Hypermobility only 10%, so few that they usual don't test for it at all, unless it's for research purposes.
  7. I'd say that most cases of EDS are not obvious. The severe ones certainly are, but I'd bet my check that most people with it are wandering around thinking they're normal. Up until a couple years ago, I was one of them. In retrospect, it's clear that I have it, my mother has it, and her mother had it. Doctors aren't well trained to recognize it, so you can't rely on them to be the "safety net." If you want a diagnosis, you have to go directly to a specialist: a geneticist trained in connective tissue disorders.
  8. This study.... I'm really surprised he found a publisher for it. My main issue isn't even the "Grinch Syndrome" issue or the fact that some might interpret it to mean exercise is more useful than it is. I have real issues with the empiricism of it. Maybe I should do a study on POTS and get together an absurdly small sample size and cherry pick my data too? Keep an eye out for my study on POTS patients who are between the ages of 18-21 where I conclude that they just drink too much Red Bull. Oh, and my 'protocol' where I slowly transition them onto a regimen of chamomile tea. New England Journal of Medicine, here I come.
  9. I've had these kind of seizures before. They aren't uncommon with dysautonomia, but doctors only recognize two types of seizures: epileptic and "other" (mental problems.) Which means if your seizure is NOT epileptic in nature you are either mentally disturbed or faking it and you will be treated as such, including but not limited to doctors poking fun at you, staring at you or walking away in disinterest. The best emergency treatment I've found is fluids and oxygen.
  10. Not all people with EDS dislocate and not all people with EDS have stretchy skin. Just clearing up some of the myths. I don't even bother with bandaids anymore; I just hold something over the cut until the bleeding stops and then go about my business. Try taking 1000 mg of Vitamin C (assuming nothing you're taking would interact) and see how that does you. When I started supplementing I noticed I got fewer bleeds and quicker healing.
  11. During general anesthesia my blood pressure crashes, even lying flat on my back. I had a grandmother whose heart would stop whenever she got general anesthesia. It was this fact, going into major surgery for the second time that clued me into the fact that my dysautonomia had a genetic cause. I have to receive pressors (like epinephrine) on a continuous basis during anesthesia to keep my blood pressure up, because the influence of the drugs will crash it every time. It was general anesthesia that caused my first POTS crash years before I knew what I was dealing with. It really depends on the nature of what's causing your POTS. I was going into anesthesia thinking I'd be fine when I remembered what happened to my grandmother and connected her symptoms to mine. Then I blurted out over and over again, "My blood pressure's going to crash, my blood pressure's going to crash." I'd never been more certain of anything in my whole life. POTS has so many different causes though, I wouldn't be surprised if someone was actually cured after anesthesia.
  12. dani, I would get a second opinion. On my first visit, I got blown off too. Meanwhile, I just got sicker and sicker. I thought that the geneticist thought I didn't have EDS, but when I saw her again, turns out she thought I did, but she just didn't think the diagnosis was important enough to log. Mostly because it couldn't be proved...or something. Not all doctors or even geneticists are created equal. From what I hear a lot of women in particular will become symptomatic after a hormonal event like pregnancy, puberty or even menopause. In any case, I think it's worth looking into again.
  13. I've been diagnosed with EDS and have a similar problem. When you look at me, I haven't lost my "tone" but I have lost strength. I used to be an amateur weightlifter and I still have that build! But I can't lift my toddler cousins anymore. Not because my muscles are weak, but because the tendons and the ligaments are too lax to hold the proper joint architecture. In other words, when I try to use my muscles to lift any significant load, the joint can't hold its shape because of the weakness of the ligaments. When I tried to lift my two year old cousin my shoulders just came apart. Perfectly good muscles; just can't use them properly! This is a fight I always get into with my physical therapists. I try as hard as I can to build more muscle, but when part of you is not cooperating (the tendons/ligaments) it's difficult. It really is important to push. Just not too hard. It's a balance Kay will eventually have to feel out for herself; no one will be able to tell her where the 'perfect' balancing point of not too much and not too little is.
  14. The crucial point of both these questions is have these things always happened? Or did they start recently? And since this is a site about autonomic dysfunction, I feel compelled to ask if you've been worked up for EDS, since all three are minor signs of that disorder.
  15. If she does indeed have EDS, which is seeming more and more likely given her age, her extreme flexibility and her dysautonomia, she will not grow out of it most likely. Her system has a defect (as yet unknown and unspecified) so what might work for a 'normal' person (getting back into shape or simply 'growing out of it') won't work for her. Not that there is no benefit to staying active as possible, but in my opinion, exercise will not cure her. I'm happy that you are on the road to seeing a geneticist early.
  16. I feel really sensitively toward the idea that POTS and anxiety disorder are on some sort of spectrum. They are related, but not as on a spectrum with POTS being tantamount to a severe anxiety attack. A woman who comes in from the cold with her eyes streaming tears is not "crying." People who release large amounts of adrenaline into their blood to maintain perfusion are not "anxious." It was this assumption that nearly killed me. My doctors saw me hyperventilating and gave me a cocktail of psychiatric medications to 'calm me down.' My circulation collapsed and I de-saturated. So not only do I consider such research to be misguided, I also find it irresponsible.
  17. I was on the registry before I knew I was ill, was found to be a match to a man in Germany and donated. The procedure severely worsened my underlying dysautonomia. I've been booted from the registry now because of POTS, EDS etc. I'm a little sad, because although my donee is in remission now, if his leukemia were to reoccur, I would no longer be able to help him.
  18. Taking 400mg of CoQ10 a day has almost completely eliminated my migraines (maybe down to one every two months now.) I used to have them nearly every week; I felt like I was always coming out of one or going into one.
  19. I have these. At worse, they resemble a full grand-mal seizure. My body arches and I can't breathe properly because my diaphragm (along with most of my muscles) won't move properly. I had a video EEG, but nothing was picked up, even during the most severe episodes. All I ended up with was a $1000 bill and the usual, "you're nuts." There's always a chance it could be epilepsy, but in my case they are related to my dysautonomia. As far as I can tell, if my brain gets too starved for oxygen my body has this reaction. The more oxygen-starved I am, the more drastic the convulsions. At the mild end, just a few jerks of my arms and stiffening of my back and neck. At the severe end, I'll collapse and convulse. I've got a couple goose eggs of my own this way. It's relatively easy to have epilepsy ruled out at a major medical center. There're EEGs, V(ideo)EEGs, sleep-deprived EEGs etc. But this sort of episode sounds exactly like what I have experienced with my POTS. Should you end up in the emergency room and anti-epileptic drugs are not working, try asking the doctors to give a large amount of IV saline. Also, make sure they keep him lying down flat.
  20. It sounds like those doctors aren't even aware of the association between POTS and EDS. Please take her to a geneticist with a specialization in connective tissue disorders-other types of doctors lack the knowledge to diagnose it. You don't have to have stretchy skin to have EDS.
  21. Black. And pretty much exclusively so. I donated bone marrow to a man whose family had lived in Nigeria (specifically, of the Igbo tribe) for generations, so my extraction is likely West African. I have an aunt who's very interested in family trees and she did my mother's side of the family clear back to slave records. Although, food for thought, I have EDS. As does my mother and as did her mother, so it might simply be I got the "package deal" orthostatic intolerance that comes with that.
  22. Erika, I totally agree with you. When I was diagnosed with POTS, they tossed some Florinef at me and discharged me with a follow up for SIX MONTHS later. As a result I was in the hospital once a month, every single month for five months straight. Even with insurance, I was bankrupted. No one ever tried to get to the root problem, or even adjusted my medication. Every month I was essentially waiting to get sick enough to go back to the hospital. I was miserable. Then in December, I was finally diagnosed with endometriosis, then EDS, then finally small fiber neuropathy. It took finding doctors who were willing to sort through my symptoms rather than slapping everything with the POTS label.
  23. I totally agree with Dianne that it takes a high level of medical literacy to get a diagnosis. I was trained as a science/medical journalist, someone who reads journal articles with new science/medical findings and interprets them for a lay audience (a field that's all but dead thanks to cutbacks) and when my doctors drew a blank I started doing research on my own behalf. The less a doctors knows, the less they let on to their patient. I had to rely on overhearing conversations between doctors to know that I needed to start with conditions that damaged/deranged the autonomic nervous system. From there I discovered POTS and from there, EDS. I can work, in a sense. I'm a writer, so I write and submit articles and poems and what not. However, I certainly don't get anything like a regular paycheck though and cannot support myself.
  24. Small fiber neuropathy is one of things that can cause POTS. 'Small fiber' refers to the un-myelinated nerves that regulate the autonomic nervous system. When they are damaged, dysautonomia can result. It can be idiopathic or secondary to something else. It can be secondary to diabetes, multiple sclerosis, celiac disease and other autoimmune diseases. Also, some non-autoimmune things like chronic long-term alcoholism and HIV. From what I've read I get the impression that many, if not most cases are idiopathic. Mine was caused by a virus that was so severe that my body attacked itself in its attempt to rid itself of the infection. My body began by attacking the long nerves in my feet and then moving upwards. To this day, my feet (and a short distance north) don't sweat at all. (My sister jokes that I can go sock-less and not have to worry about smelly feet.) I don't think EDS is one of the causes. While you can certainly have both (I do) not all patients with EDS have small fiber neuropathy. What is causing dysautonomia in EDS patients is still a subject of some contention. This is the impression I got from my POTS-doctor when my results came back positive for small fiber neuropathy and we discussed in a follow-up appointment.
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