Jordan5815

Hey guys, I am really starting to wonder if I am getting better with decreased anxiety levels since you know what is going on. Your heart rate would be lower. I still notice anxiety every once in a while with my hr going a little nuts but I calm it down dunking your head in cold water works very well it triggers a reaction to the body to keep you alive in hypothermia stages your body is forced to bring the blood to your organs including your head. Your heart rate lowers. when I'm still having problems I just take valium but that's something I don't like. Don't really have money to see doctors anymore but I will say this is what happens and my theories. currently when I wake up in the morning my hr is low and my hands are pale. My coloring is just off. My heart rate when I get up is about 74. After I eat even light meal my color comes back instantly but my hr is about mid 90's when I stand up it goes to 110-130 depending on the day. My blood pressure doesnt really fluctuate that much anymore from sitting to standing just my hr. But laying down to standing and or sitting there is a difference hr and bp. This could just be less anxiety about it all now. I still don't know if I have pulmonary hypertension I had a positive pulmonary hypertension test through an echo but since then my doctor who administered the test told me i didn't have it those tests are off. I had another doctor in the same practice told me I don't have it and my current doctor who I haven't seen in a year said I don't have it. it showed mild form tho. I just don't know if I am getting actually better or if my body has just gotten use to it so it doesn't bother me from day to day all of the time like it used to. Now it's rarely like now. I was diagnosed 4 years ago when the symptoms flared up majorly I had it 5 years ago for sure. Do people who make recoveries recover within 5 years? 17-21 were all the years I've had it I am still 21. I read here about the long term affects of POTS even tho POTS is a give me for me because I was diagnosed with pan-dysautonomia. So IDK anymore. I keep reading from people on here from POTS (Heart failure, Pulmonary Hypertension, dangerous arrythmias, and multiple other conditions.) Any suggestions I am tapped out of funds and does it seem like I'm improving or am I just used to it now. take the pain tolerance example you keep getting hit in the shoulder every day by someone eventually you won't even feel anything because you are used to it. Thoughts? - John

edit: Screw that med I've been looking at what people have been saying about it and the companies shady marketing tactics. Not a fan now.

well looks like I just wont have any pills to pop to follow those instructions. No grad reduction for me. I'm not getting any pills doctor won't give me any.

This will be interesting been on 12.5 mg for 3 years he is the one who started me on it. He now sais "I don't feel comfortable prescribing it to you" I haven't increased dosage one time so I don't know about that. Also everything I read you shouldn't stop cold turkey you should get off of it gradually. Wonder what I'm going to expect just quitting cold turkey interesting..... I wonder if I should go to one of those "pain" clinics and lie my *** off like crazy say I have really bad anxiety and I need a lot of good drugs that would work. But then again I'm kind of at the point I don't care anymore. I think I'm gonna go see a shrink and see if a SSRI will work or something. P.S. I hate medication and doctors. Doctors used to actually figure out the problem and fix it. Now they just "Practice Medicine" meaning they don't know what they are doing. Any new exciting breakthrough research on anything about dysautonomia? I see in the past 4 years wikipedia has grown with more information but don't know how much of that has to do with the members here......

What helps with disability, is make a daily log of everything how you feel, when you take your medicine sounds complicated to do if you aren't feeling good but always put medicine compliant. at the end. Your sleeping EVERYTHING. Tell your doctors you would like to make this apart of your medical records and give it to them. when Disability looks at it. They will approve you because it's part of medical record even tho it was done by you. The log in fact shows that you are disabled. Also the second approach which also works is get it on mental. The log is still easier.

In John's case. John was born with some health issues but nothing autoimmune. As he grew he was extremely athletic and in the 90% for height/weight. No issues. I always knew about vaccines (I support vaccines) after reading an article back in 1987/1988. I don't remember the name or source but the article explained the way vaccines rise and fall and that you never want one to rise while another one is falling. Complications can occur. The article stated that vaccines should be given solo and wait one month before giving another or booster. With that said, when John was an infant (1990) and having his vaccines I discussed this with his Dr. It was decided that he would only get one vaccine at a time one month apart. John's symptoms began in 2003. He started falling when he was competing in tennis tournaments, he didn't even realize he was falling. He would just bounce back up, hit the ball and fall again. Things became worse and he would fall into me when we were walking. I took him to the neurologist. Won't repeat the same information. My anger right now is with the drug companies and the cover up. Yes, there is a chance that people would not want to vaccinate their children or allow themselves to be vaccinated if they knew about the reactions. I feel we should be given the choice. Would I still have had John vaccinated. Yes, the vaccines were given a month apart and then 6 months later. Vaccinations have stopped terrible diseases from affecting/killing the majority. I wish no one had a adverse reaction to any vaccination. I never associated John's condition to the vaccine because of the cover up. If I knew, he wouldn't have had to suffer so long. The diagnosis would have come sooner and we wouldn't be where we are now. Still trying to get some relief. John and I talked about the meningitis vaccination. He would like to get well enough to attend a university. I told him, since he has dysautonomia, I personally would not have any vaccine. When the time comes, he will research the pros/cons of the vaccine and his condition. Then the decision will be made. I am strictly discussing the Hep B vaccine because the attorney that I talked to stated that POTS and CFS are reactions to Hep B. I do not know where the research is/came from. This attorney has represented children with POTS/CFS to secure funds for their medical care. He would have filed John's claim if John met the three (3) year requirement. The fund that is set up is for reactions to all vaccines. One dollar is put in the fund every time someone is given a vaccination. In 2009, from zero to age three, children receive 32 vaccinations. That gives you and idea how large this fund it. Dana mentioned the mercury in vaccines. Funny you mentioned this. When I woke up this morning that is was John told me about.He is now researching to find out if there is some way to flush the metals out of your system. John said something about different vaccines also having metal in them. I'll ask him to post his findings. Like most of you, he has good and bad days. What is very deja vu to me is my mother wouldn't have her children vaccinated. The oldest received all vaccinations. She had cancer at thirteen (she is now in her 50s). Mom had four other children and the family doctor worked with my mother. Don't know how she managed to get us in public school back in the 1960s, 1970s, and 1980s. She refused to allow the school to vaccinate us. Her and the doctor had an arrangement, if there was an outbreak of something, then we would be vaccinated. I remember at school one day when all children were lined up and given the small pox vaccination (I remember the gun). Myself and another child were outside the school looking through the window watching them get the shots and crying. Do you know now that people who had the small pox vaccination back in the day, haad to have it again. Good thing she made us wait. Ours doesn't have to be re-done. Maggie, It sounds like you and your doctor have a plan. We are very fortunate that John's doctor acknowledged he didn't know what to do for John and listened to John when John did the research and told him what doctor's were needed. His office handled the referrals. Don't get me wrong, we had some issues but once God provided an autonomic storm attack in the Doctor's office, our issues went away and the Doctor was on board. Prior to that, no medical professional saw or believed what we were describing, by the time John would get to the hospital, his heart rate/blood pressure were back within normal range. I called John's doctor last night to tell him what happened yesterday. His response was "WHAT." He never suspected a vaccine to be the culprit. I will meet with him next week. Please don't misunderstand me. There could be other factors that triggered John's condition. He has had other traumas over the years. At age 15, he was the passenger in an auto accident. His friend was driving. The boys were under the rear wheel well of and 18 wheel vehicle after several collisions. It took him a long time to not panic when I would drive near an 18 wheel vehicle on the freeway. I agree with all that was written and appreciate all of you. Your knowledge and compassion has helped John make it through everything and continue to research (on his good days). Over the past 4/5 years you all have given him hope. That is the most important thing. There is HOPE. I continue to pray for total healing and a cure for everyone. -John's mom.

Julie, John had the three shot series when he was 11 and 12. He started falling over when he was 13. The shots were required by the public school system. The neurologist wrote in his report that John was a 13 year old male wanting more attention from his mother. What a joke. John is an only child, my husband has been deceased since John was 8 years old and I was an at home mom until John was 15 yrs 11 months. I realize that there are many causes out there, this was just something I never heard about nor suspected until last Tuesday and to find out that there is a fund to provide for medical attention for life. What a shock and I hope someone from this forum can benefit. It is nice to finally have some knowledge regarding what the trigger was. Not knowing the trigger was frustrating. John may have additional things that were dormant until the shots, guess we will never know. We just have to keep our Faith and believe that John will get the help he needs before his insurance runs out. John's Mom

This is John's Mom. Today has been one of those days you wish never happened. Started by taking John to the another specialist. First time to see this GI Dr. We strictly wanted to approach the weight loss and inability to gain weight. The Dr was great. Focused his attention and didn't pass the buck to other Drs. He's running blood tests for celiac disease. If the blood work is positive, John will have a biopsy. Next stop, Veteran's Affairs to check on the status of my claim filed for helpless child. Found out I was denied a year ago. I never received the mail. Long story. Will file another claim. The claim will be for a different health issue. On the way to our next stop, I checked my voice messages and returned one call. This I thought would be good news. Let me back up, last Tuesday I attended a meeting. I was listening to some ladies and heard them mention vaccines and reactions. I then asked them if they thought John's condition could be the result of a vaccine reaction. One lady took the information to work and passed it on to the Nurse that handles the legal Suits. Needless to say, the Nurse came back and said his condition sounds like an autonomic dysfunction related to the vaccine. During my phone call I was informed of the attorney that handles the Suits for children. I was told that there is a fund out there that provides medical care for children for life if they have suffered as a result of a vaccine reaction. I called the attorney. Good News for some of you. POTS and CFS are directly related to the Hep B vaccine. We finally know what triggered John's condition. Guess I should be pleased with the knowledge. Bad news for us. Congress wrote the Statute so you can only file a claim for the Plan For Life funds if your claim is filed within three (3) years from the date of the vaccine. (Most Statues are written as so many years from when you knew or should have known- Mine would have started last Tuesday under a Statue like that and most of yours would have started today with this posting.) John started suffering 6 years ago. Who heard about complications from the Hep B vaccine? Needless to say. There will not be any funds to help provide for his medical needs. My insurance will cancel him in February when he turns 21. Yes, if you are in the States, there is the new law that parents can keep the children on their policy until the children are age 26. There is an exception. When the government put this plan in action, they excluded themselves. My insurance is through the Military. When I contacted them, I was told they were not part of the new plan. Hence, John will not have coverage beginning in February, unless God performs another miracle for us. I truly hope He does. TO ALL MEMBERS OF THIS FORUM: PLEASE CHECK YOUR/YOUR CHILDREN'S SHOT RECORDS. IF ANYONE HAS HAD THE HEP B VACCINE AND YOU ARE SUFFERING FROM POTS/CFS CHECK THE DATE OF YOUR VACCINE AND FILE YOUR CLAIM BEFORE THE THREE YEAR DEADLINE. If you know of someone suffering, please let them know. This fund will not help us but I really hope by posting this others will benefit. The fund is a hidden secret. Did any of you know about it? Our last stop for the day, the post office. Yes we finally received the decision from social security regarding our Appeal. Congratulations, you are DENIED. Unbelievable, three strikes, your out. Next step, if we decide is with the Federal District Court. Social Security told us we could file a claim in the Civil Court. As a parent, I know I'm not alone in my frustration. Right now I'm angry, hurt, sad. My child has been suffering for years and every step we take to get him some help/relief is knocked down. I love my Country, I work for it, but how can the powers that be, make the decisions to ensure that most law biding honest people do not get the help they need for themselves (if you are the one suffering from this condition) or their children. To set up a fund and then use all of your power to hide it really stinks. If you meet the criteria and would like the name of the attorney, please PM John. The attorney does not know that I am posting this and I do not want him to get overrun with calls when you do not meet the criteria. Specifically the 3 year deadline. Sorry, no way to get around that. Administrator, If you would like additional information, please PM John. -John's Mom. John here: Yeah, today really sucked. Don't know how I feel right now, depressed I guess. Still thinking about the rehab, will have to wait until after I finish with the GI doctor. Will post more later and I think the Dinet.org on their pages under POTS should put, can happen from Hep B vaccines. It is now a confirmed cause and we have more answers. Please let us know what you think my mother's really down......

Julie, This is John's mom responding. Family history: my mother had a racing heart when she was younger. She said that people across a table could see her heart pounding through her blouse. She used to pass out all the time, and she hemmorraged (spelling) with her cycles. When she was about 30 she almost bled out and had to have a hystorectomy. Just found out from her sister that the family used to find my grandfather in the field. He would pass out. He was a farmer. My Aunt's son also had problems with passing out during his puberty years. He is ok now. Me: I have 4 siblings (with same mother). I was the only one that was induced. Mom said the reaction was instant. As soon as the peptin was injected into her, I came. She said that I instantly rolled over. She had to wait in the delivery room until a crib was brought in for me. I was walking at 5 months and extremely active and athelitic. I have suffered from migraines my entire life. The stories I have heard from everyone was that I would constantly cry and beat my head. When I was in my 30's I finally told my mother that I remember my headaches at 4 years old and told my mother that I probably had them as a baby because how does a baby tell someone there head hurts, they can't other than cry and hit their head. I lived with a headache every day of my life. When I was 16 my migraines really exploded. I thought I was put on phenobarbitol/dilatin for the migraines but my mother told me no, it was because they thought I was passing out and having seizures. I always hemmorraged with my cycles. Finally, at age 33, I was bleeding out and had a hystorectomy. Since my surgery, my migraines are more manageable. Actually, I have about only 4 days are month that are bad for me now, prior to my surgery I would be lucky if I had four good days a month. I am hypoglycemic. My father was diabetic. Actually, his brother and mother were also diabetics. Don't know much about that sides family history. My mother and father were divorced when I was 5 or 6. I know that there are heart issues, high blood pressure, low pressure on both sides. Weight issues: I was thin until puberty then I was of normal weight. I started taking steriods to get pregnant. Then discovered non-steriodal anti inflammatory pills worked for my migraines. I could take the pill and live. It was great, migraines at bay, not having to leave work/school. Took them for almost 9 years when I discovered that the pills had small traces of steriods in them and I was suffering from all of the side effects except heart attack and stroke. I am very thankful I did not have those. At that point of my life, I was very sick, disabled, couldn't lay down, sit, stand for long period of times. The only comfortable position was in a recliner. I then gained weight. In one year I was on 13 medications and gained 100 pounds. I had a resting heart rate of 105. I tried to find out what was wrong but we couldn't because of the weight causing additional issues and medication causes additional issues. Finally, I was at the end of my rope and I fought my insurance company to get the RNY gastric by-pass surgery so we could find out what was causing the original problem. I am currently about 30-40 pounds overweight. I gained this weight back after what has been going on with John's health and both of my parent's were ill and dying over the past 4 years. My mom passed in March from COPD. She had mitro valve prolapse (diagnosed at least 25 years ago) and was a smoker. She stopped smoking about 7 years before her death. Pregnancy: I took steriods to get pregnant. John was a high risk pregnancy. I was put on bed rest two times during the pregnancy. The Dr induced me with Peptin. John was full term. 24 and some inches long, weight 8 pounds 10 ounces. His apgar rating at birth was 9 and 10 after one minute. He was holding his own head up and following the noise in the room. As an infant he was the dream baby. He slept all night, wasn't fussing. He was always int he 90 percent for weight/height but he would have projectile vomiting up to 4 hours after eating and he would turn blue. He also had digestive problems. He had issues with constipation. When he was 6 weeks old he was finally diagnosed with VSD. The reflux diagnosis was either right before or after the heart diagnosis. John started walking at 7 months. He was taken to the orthopedic Dr because he was going bowlegged before he was 1 year. John was 3 feet tall on his 2nd birthday. He was never fat but he was of normal weight and muscular. He was very athletic even at 2. He wanted to throw balls over the one story house. He would spend hours practicing, finally he did it, same thing with riding a bike around obstacles. When he was 4 and 5 he was riding a horse (barrel racing) in rodeos. He was also ice skating, playing soccer, and t-ball then baseball. There was not a sport that he did not excel. All during his growing, he would complain of bone pain. I was told it was normal growing pains because he was taller than most. Now he is of average height for his age. His weight has bothered him since he lost it at age 14. I notice when he is heavier, he does not suffer from his symptoms as much. Once he loses weight, he suffers. Age 13: John was playing tennis competatively. He started falling down. He was going through a growth spurt. His falling was so bad, I took him to Drs. Who brushed it off as a child who wants attention. My husband was deceased and I didn't work. John had undivided attention. The Dr was a joke. Age 14: John lost 20 pounds, had surgery for reflux, lost another 20 pounds. At that time, John was around 5 ft tall. By the time the weight came off he weighed 117. He is now 5 ft and his weight range 122-134. At least 35 pounds underweight. By age 15: John was no longer involved in sports. He was a passenger in a car accident with a 18 wheeler he had a head injury. Age 17: John was having chest pains and was diagnosed with pulmonary hypertension. When I asked for documentation to transfer job locations, the Dr said after re-checking the test, he did not have it. I transferred to a lower elevation. By Dec 2007, Jan 2008, John was disabled. He would sleep 18-36 hours straight. He would try to eat but did not have an appetite and couldn't gain weight. He was finally diagnosed with POTs in June 2008. I think John has covered everything from this point on. - John's Mom Ok John here now, what you guys think? During those "panic attacks" If that's what they are called I get nauseous then i start feeling slightly anxious with heaviness in my chest I then get a palpatation then my heart just takes off and hits about 160bpm with constant feelings of skipping beats the entire time it's going on. I usually end up on the ground my hands and feet start getting tingling then parts of my body go numb and i start shaking rapidly. the heart palpatations knock the wind out of me each time i have them during the attack. afterwards I'm exausted and usually go to sleep. those started when I was 17 valium stopped them.

towards the disability my problem is I can't stay awake and it's not the valium or toprol xl I can sleep for 14 hours a day and am only up for about 12 hours before i crash sometimes less..... I don't really have a problem with low blood pressure. So now it looks like puberty is a trigger and underweight makes symptoms worse hmm.... just about everyone who has posted has confirmed that.... (Julie did you mean to post something?) I see you quoted some stuff..

Towards family history I will add more on that later but all of majority of them are actually obese. also they were never underweight when they were younger they were of weight. My mother had migraines her whole life that is the one symptom she has always had don't know about anything else I know she had a thyroid problem hypothyroid which caused other problems but that was corrected. Towards my weight gain: I have been trying to gain weight this past week I have eaten 3 large bowls of pasta a night with a lb of ground beef on it and i eat steamed vegetables for the minerals. I just now have confirmed to myself that weight is largely involved with my symptoms why I'm trying to figure out = that theory i'm trying to figure out. I've wanted to gain my weight back since i was 14 didn't look healthy I was always really muscular and big. I want my same body type back and am working on it. I still have acid reflux but I don't at the same time. i had surgery to correct acid reflux with a hiatal hernia repair. So the surgery was called the Nissen fundoplication surgery I wasn't vomiting from eating, as of now I can't vomit because of the surgery. I think having the surgery was dumb I had lost alot of weight but it wasnt from the acid reflux because I wasn't throwing up so i was still getting all of the food I ate it was something else. I was also a Fertility Baby so that could be why I'm so different then the rest of my family with health issues. My mother had to take sterroids to get pregnant and not have a miscarriage. I was also born with TONS of health problems VSD, GERD, and I forget i was a sick baby lol Also before I got sick I was a conditioned athlete i was a tennis player I played in state championships and also did some international tournaments so I was definately in shape. I do excercise I try to about 4 times a week I just got some roller blades so been having fun with those I see you went to John Hopkins, what doctors in what department did you see I have USFHP as my health insurance and gonna lose it in february if I don't actually get my disability but that's why I'd like to know what doctors you saw I called them up they sent me lines to neurology genetics and cardiology don't know which route to take. The Rehab I'm going into would be Drug Rehab with group and 1 on 1 therapy as well as the eating stuff. It's affiliate with a hospital so they can run tests if stuff doesn't seem right as well as a full psych evaluation and 6 ER doctors on staff in the fascility at all times. Thanks Julie! - John

I don't have EDS. I also have a medium frame. Towards the Hollywood the people with nervosa do have health problems. Not everyone who is underweight would develop autonomic problems could be other organs. Weak Bones are a big one but most of them appear thin but they are actually of weight they have a lot of muscle, that will weigh more then fat. Also Brittany Murphy's brother posted on here I believe talking about Brittany Murphy most likely had dysautonomia and she was pretty thin. I also noticed in his video he lost alot of weight and had trouble gaining after. I created a new theory today, in alot of the reports I have read about "POTS" is that if it develops in early teens it usually goes away in their mid 20's when you turn 25 your body goes through a rapid change including your digestion. I'm also looking at the side effects of adrenaline online it causes loss of appetite. Think and think hard before you got sick and this is for everyone to answer not towards one individual person. After you excercised and worked out were you hungry? I sure wasn't. I was thirsty! if I ate something it had to be cold or like a fruit and drink fluids. if you are underweight your body is still producing the same amount of adrenaline as a person who is of or over weight but at a higher concentration since your mass is smaller. That would cause lack of appetite and back to being underweight causing organs not to function properly possibly triggering a dysautonomia. so when your underweight you are burning more calories just sitting from a higher concentration of adrenaline which causes lack of appetite which could be the root of the problem. I have also read on this forum numerous times that people with dysautonomias are extremely sensitive to adrenaline. Could it be because they already have alot? I'm also not summing everybody up one thing I have learned about dysautonomia is it isn't a disease it's a dysfunction of a very important part of your body which can be caused by alot of different things. It can be caused by disease but itself is not a disease. This is why ever patient is different because there are different causes for each patient. There are people of normal weight, overweight, and obese with dysautonomia as well. I'm looking tho for some people could it simply be the fact of being underweight? I get to 130's and I'm feeling better I wonder what would happen if i could get to 145. so person get's a viral illness even tho I don't know if that's how mine started i just know it struck when i was 14 and then i had a surgery for acid reflux. They thought that is why i was losing weight even tho it wasn't. But! illnesses cause lack of appetite and in some cases can be pretty severe when the weight is lost you run into that problem of gaining it back as you have a lack of appetite because of the adrenaline and it can worsen over time. Dysautonomia could even be triggered from one of the vaccinations they give you when you enter highschool the 4 series hepatitis shot could be the cause for all I know notice POTS is on the rise I don't think it's because there is more awareness I really think it's growing look at what vaccines are doing to babies alot of babies are now starting to become autistic. But after the weight is lost and you have had the symptoms for a while it could just be getting your weight back and watch the symptoms disappear? - John

I have been tested for all but number 2 but i never had a problem with hyperkalemia i was actually hypo several times. number 3 was the first thing i was tested for when i was in the hospital before they ever found out i had dysautonomia. and number 1 was tested for 4 different times. So I've been tested for the most part on those. I should check on addisons but it will probaly be another dead end. My endocrinologist back in the day did a ACTH and cortisol test and came up normal.

Was he always underweight or did it happen dramatically? = What's his story?

I forget the source but for my height, gender and body frame my weight should be 145 that would be the low end. I currently weigh 122. I always notice when I start getting really sick I am a lower weight then when I am in the low 130's. When I have 130+ weight I have milder symptoms. my BMI is 16.5 I'm 6 ft with a medium frame. I'm gonna bring up something a little controversial but it is true. I believe I am annorexic not to be mistaken for (Annorexia Nervosa) which is a (psychological disorder). Annorexia simply means (loss of appetite which causes weight loss). Alot of cancer patients have this and people with conditions like diabetes. I have not been diagnosed with either. I am now 20 and lost 40 lb's in 2 months when i was 14 years old before then I was fine. I just lost my appetite and couldn't eat anything. I go through times when I can eat everything and other times where I don't want to touch anything. I was reading about being a low body weight it can cause organs (including your nervous system) to not function right I could be wrong tho. I have proven now to myself that my symptoms get aggravated tremendously by my weight if i weigh less my symptoms are aggravated tremendously. so these are my explanations. 1. My dysautonomia is caused by being underweight. 2. my dysautonomia is causing me to be underweight. 3. my dysautonomia is causing me to be underweight which aggravates my symptoms. My diagnosis was mild pan-dysautonomia i still don't know the full extent of that. but I weighed more when I was 14 before this condition even started then I do as of now. plus I have gotten taller. I am going into rehab for valium which I have been taken for the panic attacks or whatever they should be called because the entire time they happen I don't panic so IDK what to call them. I keep trying to get off of it I have been on them for 3 years and after 7 days i start having them like crazy. which hyper sensitivity to even my own body movements let alone to sounds and everything else. The rehab I'm going into will also do a psych evaluation and help me gain some weight. they are aware of my dysautonomia as I am seeing a doctor there to see if it is the right place for me this is not a psychiatrist I am seeing. I will be there for 1 month see if i can gain some weight and get off these benzo's which I hope after I get out of there I don't have these awful panic attacks. I could even have PTSD from this condition itself. You guys know this condition takes you to **** and back so developing PTSD from this disorder could happen, think about it. My question is is it possible that my dysautonomia could be caused by being underweight? ever since I was a little kid i mean like 5,6,7,8,9,10,11,12,13,14, etc. I have always had bad joint paint under my knee's my mother thought they were growing pains but I had no other symptoms of dysautonomia's when i was 14 is when it started when i was 17 is when it hit me full blown and I was 116 lb's. here is a comment someone posted on a forum: "Also - being underweight can cause anxiety - as low body mass means less adrenaline in the body will still be higher concentration compared to that same amount of adrenaline - but in a higher body mass. So get your weight up which should happen naturally with excercise with the right diet." I found that on google low bmi = higher concentration of adrenaline Your thoughts? btw: symptoms of underweight include fatigue = I have, brain fog = I have, numerous other = I have except the low blood pressure and vitamin deficiencies and strength. My orthostatic symptoms even improve when I am in low 130's. And any updates on that retro virus XTRV or whatever it is called I'm curious to know I have the feeling Mack's Mom will also be posting in this topic - John