heissovereign

I will definitely share, I hope he is helpful.. lol like most with this illness, I don't have much confidence with doctors.

Yea that sounds right, I know it also depends on your age when they use the percentage. I could be wrong but my 2.1 mets made my percentage low because I was 23 with a low mets score so my percentage was 19%. Meaning I'm in the 19th percent with values this low for my age. But may be wrong. I'm going to ask him about all of this tomorrow.

I definitely understand, I Am going to talk to him tomorrow about this. Because he isn't providing any help with this. No plan for new test. My treadmill only lasted one minute, I was so symptomatic from the time I stood but I pushed through until I almost passed out, and this test was back in july when I was taking care of my newborn. I was so active and felt a lot better than I do now. Makes me wonder how it is now. But yes this seems like the same test. Wow if 32% was bad mine was 19% for my age and I only know this because I requested my records.

Met is the metabolic rate, used to help measure functional status (your energy expenditure). Six years ago mine was fine at 12.8 but now mine is 2.1 and he said I had poor functional status. I am in the 19th percent for my age. I mean I know I am very weak a lot but I am still taking care of babies. I know I'm not deconditioned as I do as much as I can, I haven't given in to my illness I still push myself . But with my leaky valves I think that is what's making me worst, so I'm gonna ask my cardio tomorrow at my appt. I was just curious about others that deal with dysautonomia, and if your score is low also. I can't exercise my old very good cardiologist said with my fainting its not wise. Because we have tried building my tolerance and it doesn't work. Its very disapponting I went shopping yesterday and did really good in the wheelchair. I hate it though I want to know what its like to stand and not be dizzy or short of breath. I have never known the normal. Lol and I'm not exaggerating.

Those of you that have had a treadmill stress test what was your mets score?

I had mild symptoms at birth, like breathing and digestion issues. Then at six I started with the fainting. And it has been progressing since. Docs told my family nothing was wrong. I was finally diagnosed last year at 23 with ncs and sinus tachycardia, and I also have mild regurgitation in 3 of my valves. Just last week was diagnosed with IST with sinus bradycardia, and PAC's. And poor functional status. As a teen they told me it was just anxiety.

That is interesting kimbellgirl, I noticed my regurgitation from my medical records, I have regurgitation in my mitral,tricuspid, and pulmonary valves with borderline increased thickening in my aortic valve (not sure what that means) I have had pacs most of my life but didn't know what they were. I just haven't had a doc address it. But I am sure I have mvps, and like you said being symptomatic is probably due to the dysautonomia. I have a bp machine with irregularity indicator as well that is where I found it first and then had the holter confirm all the different arrythmias.

I have pac's, doctor said they have gotten worst in the last 7 months according to my holter. But I don't have pots. I have ist, And waiting on confirmation for mvps/d which also causes pac's. But being you have pots I could see that being it as well.

Thanks, I felt horrible that I was mad at the doc. But am glad I got to the bottom of it. Naomi thank you, we have all been through a lot. I am just glad I now know some of what's wrong.

You guys thank you so much. By the way he has autonomic dysfunction and autonomic insufficiency in there what's the difference or are they synonomous?

no, he isn't saying much lol i only know all of this because it is under the conclusions and diagnosis in my records from there. I just know they need to figure out something else to give me alongside the florinef because it is still miserable. and i have been on it over a month now.

thank you mrs Janie

Hello all, I posted last week about my cardio saying no need for testing or meds, Well that was the nurse... She messed something up. I got my records straight from the doc today and He has diagnosed me with NCS, IST, with frequent PAC's, and OI, along with sinus arrythmia which from what i understand sinus arrythmia is common. and concluded prognosis as poor functional status. He is planning on putting me on midodrine if i remain symptomatic on monday, which I am. so Finally some answers. this was after an old tilt test, 2 holter monitors 7 months apart from each other and an treadmill test where I only last 1 min and 1 sec before getting extremely symptomatic, now all of this was before my meds started. he said my hr went from 49 supine with BP of 120/70, then immediately after standing my hr jumped to 100, then at 1 minute 1 sec my hr went to 155 and bp only to 122/70. it never compensated for the hr change. now this is how i was before the meds so i do see that florinef has changed it up, but im still as miserable. so with my bp not compensating and all of this from what i researched this is PAF which had been mentioned to me before. does that sound accurate? also instead of waiting to go to the neurologist that said he would send me to vandy, im gonna ask my cardiologist about it. I just don't understand why he didnt tell me and my husband this in the office, i go back on Monday. I was ready to dump him over the letter that supposedly came from him, which obviously didnt. I am relieved, now to just put the pieces together. by the way could all this be why i have CVI, my legs are covered in varicosities.. For many years i suffered through and pushed and pushed myself, I have been sick for 18 years and instead of stopping at my limits i listened to doctors saying nothing was wrong so i worked at warehouses driving stand up fork lifts for 3 years straight working, at 12-16 hr shifts and at one time worked 12 hr shift and then as a night time job worked at fedex, I pushed myself over my limit many times i was passing out almost every week but they would just say anxiety so why wouldn't i push through. or maybe it was just dumb i was 16 when i started working luckily after i got married at 19 my hubby didn't want me to do it anymore plus hospital bills were adding up and i had just wiped myself out. I haven't worked in 5 years but now have my kids that I have trouble playing with because of this. Did i make it progress faster by pushing past my limits all these years. My mom and dad took me out of school because of the fainting from standing or playing my flute which i could never do, i guess i should have looked at it all and trusted myself instead of everyone else. I am afraid i made this worst because i believed the doctors. sorry i got long winded, this is all a little relieving but yet overwhelming because i havent been in that stress for 5 years but i am 10 times worst.. looks like progression to me, even though the doctors that did actually have a hint of it years ago said i would grow out of it by 20. i was 8 when they said this, I am alot worst than when i was 8. so looks like its not going away, hopefully i will just be able to get the right treatment finally and maybe have a life where im not fainting or my feet turning purple within seconds of standing and oh ugh the neuropathy that is so painful and then leaves my legs paralyzed for about 20 minutes leaving me to wonder if i will be able to walk again. ok sorry again i am done... I know that I am no longer alone on this as some of you have been so helpful to me and i appreciate it dearly,. Now that i have it in writing that im not crazy i feel much better...

Thanks sorry I should have clarified. I mean eradicate the bugs from their possible hiding places like washing bedding and such. Its just a lot because we shared a lot of things like bedding and such when we didn't know she had them. And I thought the same but there hasn't been any other contact as we have been stuck at home until that one time, I called the restaurant and they said it is possible and they are looking into it.

SO, happy valentines.... yea my 2 yr old woke at 1am screaming for help so i put her in bed with me thinking its her normal night fright. after tossing and turning and scratching until 4:30am, i finally get up and look at her head. She has lice!!!! the only time we have been out of the house in weeks was thursday we took the girls to a restaurant to have time away from the house and for my 2 yr old to play. well obviously the matting under the play area is infested with Lice because we have not left this house except to go there. she threw a tantrum when we went to leave and would not get off of the mat, it was busted open as well... so looks like thats where she got them. so I have been basically up since yesterday morning at 8am, because i couldn't sleep as it was. but have been having to tear my house apart to eradicate any that might be around. I got her treated and de-bugged luckily my 10 month old doesnt have much hair... and lol I treated myself just in case but i have naturally oily hair so i doubt they would like me but my daughter has fine clean hair, i think i'm gonna start putting mousse or gel or something in it to prevent this. Gonna make a call soon to the restaurant to let them know to check their play area. Please pray for me, my heart is going nuts from being up all this time and on my feet cleaning. I will be sick for days!!!! LOL Happy Valentines day for me!!!

Yes that always happens to me, my hip and back do this but it doesn't just happen when he massages, I don't know why. But it itches on the inside and I cant actually itch it, drives me nuts.

Thank you all, I am looking for a new one. A friend stumbled upon a upper cervical chiropractor, and from what she said he explained all about dysautonomia. He did her adjustment and she has had some benefit. She started having symptoms of pots right after a neck injury in a wreck, and has fibromyalgia. Now my issues started at a young age and not after any neck trauma, so would this even help? Or I mean since he understands autonomic dysfunction, could it hurt going to him? She told me he uses this instrument that you hold onto while resting that through the things that it measures like the hr and respirations and such that his system can tell him whether you are dominant sympathetic or parasympathetic. She was the latter. Now i dont have a definite dx besides dysautonomia and ncs due to lack of testing, but i have issues with everything the ANS controls. So what do y'all think would this be a waste? Lol right now I'm wasting time with my cardiologist. See I was thinking that since he knows and understands the ans maybe he could at least put me on track with a doc who could help, and consult is free. she said he was the first doc who didn't treat her like she was faking. I ultimately know that I can't expect to have same results, but what can it hurt?

Beyond frustrated.. I should have known this would happen. I got a report in the mail from cardiologist saying my holter showed in significant abnormalities so no need for further testing or medication changes. But yet I can't even carry my nine month old because of the fluctuations in my hr. It will go from 40-80 while sitting without any strain and then drop back down to 40. And on standing will spike 40-60 bpm and seems to be getting worse. Does anyone know of a doctor experienced or even sympathetic with dysautonomia. Anyone in the area of ms, this has been 18 years. And I just want to be able to play with my kids, and to just at least have treatment for symptoms but they just give up.

No this is the first treatment I have had, I will definitely look into it and mention it to him. Thank you

Hello all, ok I have trouble with bradycardia. Sitting and laying down it will be 40-48 bpm sometimes lower. I stay fatigued. When it gets to 45 my eyes close because I get weak, but if I stand it spikes to above 100 bpm. And if I do anything it goes higher. I Am on 0.1mg florinef morning and afternoon, and paired with salts and fluids it has helped bring my bp up, but what can I do about the bradycardia? There are times while sitting that my hr will jump to 75-90 but then as fast as it went up it plummets back down. This is very exhausting especially with caring for two babies. Any ideas I can bring up to my doc on the twentieth. He mentioned maybe pairing midodrine with my florinef will that help?

Fiona-jane I hadn't seen many people that started young like me. I was just diagnosed last year with dysautonomia I haven't had proper testing past that but until I do I am researching.

I have been symptomatic for 18 years. it started at six I sought treatment but they claimed it was all anxiety, but at one point due to the grace of the Lord I was treated for other issues that helped my issues with dysautonomia. but that was short lived as my parents thought like the docs so they took me off all meds. But this is the worst I have ever been. I now know that it is dysautonomia but can tell it had been progressing, I now don't just faint but also stop breathing and my neuropathy is now in my legs,feet,hands,arms,and face. Ugh and I Am only 24.

Interesting thanks rama, I think one of the worst things about it is my hands will be so hot. My own daughter says my hands burn her. My doc mentioned me going on midodrine along with my florinef when I come back the 20th. What meds are you on kala?

Sorry, I have had this issue with doctors for a very long time. Even had a couple of them yell at me, I had one good doctor which is the one that diagnosed me, after 18 years of doctors telling my parents and I, that I just wanted attention. Ugh! Well now my good doc moved away, and now the cardio I have doesn't take anything I say seriously. Like lemons said they are ignorant and most are too prideful to hand our cases off to someone that can actually help. Which is why like you I do my own research until I can get to vanderbilt, lol I always tell my husband with us paying out of pocket we should at least get our money worth. hang in there

I honestly Am not sure, I would think neuropathy at least for me because my hands and face are swollen and tingly. It is very painful and my face makes me look like a puffer fish.