NeverGiveUpOnLife

Well my doctor has been confused lately, and today is the day I find out what's wrong with me. For 9 days I've had symptoms that I wasn't used to when I have a dysautonomia episode. I've been having night sweats, more tired than normal, went from 126lbs to 116lbs in 9 days without trying, and 2 days ago started having this pressure/squeezing pain in my upper left stomach under my ribs, doctor said it was my spleen and that it was enlarged. So she told my mom and me to go to the outpatient children's hospital to get blood work done and we did. She called yesterday night and told my mom and me to come to her office at the hospital at 10 AM she wouldn't tell my mom any news on the phone she just said for us to be at her office so we can talk. I know she suspected Hodgkin's lymphoma- but I never accepted that, I'm 17 I don't want to hear about cancer and I told my mom I don't feel sick enough to have cancer. My mom has been stressed all night and so have I, neither of us got much sleep. Has anyone experienced this or have any advice?

I've had so many concussions through out the years and I thought I was getting better at noticing when to sit or lay down before I actually pass out, well last night I was in the bathroom and went in a cold sweat then lightheaded and passed out and ended up hitting my head on the heater, I didn't have enough time to lay down. What are some ways of dealing with passing out? I'm not going to have any brain cells left if I keep hitting my head lol. is there anything to do to fight it long enough to get in a safe spot first?

Thank you so much everyone, I'm emotionally feeling better after reading everyone's comment thank you!! I seen a therapist when I was 15 and honestly I think I was given the worst therapist in the world, he kept telling me "always remember people have it worse than you do, some people go through tougher times" - don't get me wrong I completely understand that people do have life worst than I do and I feel so much sympathy for them but I went to him to help ME and MY LIFE and all he did was make me feel like I need to stop "complaining" that's why I stop telling my mom and close friends when I'm in pain or going through autonomic crisis. My mom lost her job because she had to stay home to take care of me and she just got a new job 2 weeks ago since I've been toughing up and taking care of myself more. My mom is also sick with diabetes type 1 and she also has kidney problems so I don't want to focus all on me, I want her to put her health first before mine. She's the only family I have, we moved to NC 2 years ago away from everyone we knew. She hasn't been doing well since my dad left us but I'm trying so hard to take care of her since she did so much to help me through the real hard times. I'm scared of dying before her- she had 2 miscarriages before she finally had me and I don't want her to have to deal with losing her child, again. I do plan on finding a new therapist that isn't rude like the last one- should I go to a chronic illness one or a regular therapist? I've seen many doctors at Dayton children's,Duke children's,Brenner children's, and went to Vanderbilt. I've had good doctors and bad ones, I'm sure you guys can relate to seeing so many doctors so you know how tiring it can be :\ im sorry for writing such a long post but this website is the only place I can vent out my feelings with others who know what's its like. Once again,thank you everyone for the great advice!

I was born with Birth Dysaufonomia and on my medical record they have it listed as familial Dysaufonomia because they are almost identical. As I get older I notice I get sicker, I'm 17 now and I go through times of "remission" where i feel very healthy! Sometimes I forget that I have this illness because of how good I can feel during remission. Then unexceptedly I go into autonomic crisis and then reality hits me on how this illness ruins my life. The doctor said most patients live til 35, I'm scared of dying. My cousin had this and she died at 22 years old. My uncle made it to 29 years old. I want to go to college and earn my doctor of pharmacy degree but in reality I don't know if its possible. I try to stay positive and upbeat so my mom doesn't worry but it's getting hard for me to "fake a smile" I just wish a cure could come soon to heal everyone with any form of Dysaufonomia... How can I stay positive? I'm depressed and I hate this feeling

Everything by Lifehouse Stand by Rascal Flats A little bit longer by Nick Jonas Pray by Justin Bieber Hold on be strong by 2pac Ronan by Taylor swift I won't give up by Jason Mraz (my favorite!!)

Hey everyone I was interested in knowing when others go to the emergency room, like how bad do your symptoms have to be before you decide you need to go? I've been to the hospital to many times and realized all they do is admit me and load me up on medications for blood pressure,heart rate, and fluids. Last night my heart rate went up to 186 while laying down but I didn't feel that sick all I had was pressure in my chest and half way down my left arm- I know some people say when ever you have pain going down your left arm with chest pain/pressure then you have to go to the hospital but I have that so many times and I haven't died so obviously it wasn't serious enough for me to go to the ER. Since I'm underage I have to go to the children's hospital and they just look at me like I'm crazy because most of the ER staff there doesn't have a clue about my illness. But for the past 3 days I've had a constant pressure in my chest and my heart rate has never went up that high before it normally goes up to the 150's now it goes up to 180's. I feel alright minus the chest discomfort. So I don't think it's serious enough to go to the ER. When does your symptoms get so bad that you go to the ER?

I've had seizures since I was 3 years old, I have absent seizures and had 1 grandmal seizure (thank god I don't have any more of those!) I'm on seizure medications and now I only have 1-4 seizures a month hopefully I can stop having them forever

It's very confusing lol They should just make it half red and half blue- I wonder why dysautonomia doesn't have an official color?

On dynakids they say it's red. However others have said it's blue- which one is it? i have familial dysautonomia and on the FD website they don't mention a ribbon. I'm confused between red and blue now lol does anyone know the right color for it?

Hey everyone, I’m Jillian and I’m 16. I've been sick since I was 3 years old. At 15 years old I was finally diagnosed with Dysautonomia by a cardiologist. 8 months he had me on the same medication, and it didn't help. He kept saying "wait another month and see if it works, sometimes it takes a while". Well I’ve waited 8 months with no luck. So i went back to my neurologist and after he found out I was diagnosed with dysautonomia he said he really doesn’t know what treatment to try next (he was really nice and acts more like my friend than my doctor lol) well he said he would refer me to another neurologist at a children’s hospital to see what he says then told me after seeing the new neurologist i should keep going to him and the new one. Well I went to the new neurologist and he asked me to explain my "Episodes" - which took forever because I have so many different episodes that have happen. My newest episode is (no matter if I’m standing, sitting, laying down) I will get light headed, dizzy, bust into a cold sweat and it looks like someone poured a gallon of water on me, then I will lose my ability to stand, move, talk- I lose all ability to communicate. However, even with the ringing in my ears I can STILL hear people- they sound far away but I can still hear them. The new symptom added to my episode started 2 weeks ago and has been happening with every episode now and the symptom is- I stop breathing. I try to breath but my lungs won’t respond, After about 1 minute I can start breathing again but I don't start breathing normally- I breath shallow until the full episode is over. It’s like my whole body is paralyzed and I’m just trapped. My mom says I turn very pale, and even though I’m sweating I feel as cold as ice. These last for 3-10 minutes before I can even talk to anyone. I told the new neurologist all this and even told the neurologist that I was diagnosed with dysautonomia. The neurologist completely ignored dysautonomia. He then had be lay down on the bed, take my pulse and BP, then sit up and took my pulse and BP then when he had me stand up he took my pulse then when he was taking my BP I noticed it was taking him longer to get a reading than it did with the other two, he had the BP cuff bumped up a little over 200 for almost 2 minutes ( I thought my arm was going to pop off O_O ) and after 2 minutes he gave up and said "I couldn’t feel your artery, I couldn't find it at all, that's weird." Well 30 minutes pass of just talking- then came the time where he gave me his opinion. He wants me admitted to the hospital for 2 weeks with EEG EKG on me 24/7 during the hospital stay. He said it could be my brain, heart, or (this really made me mad) "psychogenic seizure'' which means "fake" seizure. I told him I had over 15 tests done on my brain, heart, and I went through a whole 4 days of mental test and it was proven I had no mental problems. My original neurologist already did an EEG (using strobe light) and said it didn't show any thing. I had an EKG done and only showed my heart would jump 50bpm at random times. This new neurologist is completely ignoring dysautonomia. Now the new neurologist wants my mom to set up my admission date by next week, I find it pointless to have all these test done that I’ve already had done before. I came to him for a treatment, not new test, or a new "diagnosis". My original neurologist wants to send me to a new neurologist who is actually an autonomic specialist so I will be waiting on hearing when my appointment with her is. So what do you think about all this?