heissovereign Posted February 15, 2012 Report Share Posted February 15, 2012 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... Quote Link to comment Share on other sites More sharing options...
janiedelite Posted February 15, 2012 Report Share Posted February 15, 2012 I don't have answers for you as for as prognosis, but wanted to offer congratulations on getting some of your symptoms diagnosed properly finally! I'm so glad that your doctor is taking you seriously. There are many meds that can be used to treat dysautonomia, and hopefully you can find the right combination that will give you more energy to play with your kiddos! Quote Link to comment Share on other sites More sharing options...
heissovereign Posted February 15, 2012 Author Report Share Posted February 15, 2012 thank you mrs Janie Quote Link to comment Share on other sites More sharing options...
puppylove Posted February 15, 2012 Report Share Posted February 15, 2012 That's great that you got diagnosed finally. So happy for you! Quote Link to comment Share on other sites More sharing options...
ramakentesh Posted February 15, 2012 Report Share Posted February 15, 2012 I dont think it automatically means PAF. NCS is usually made up of two different groups - one with low sympathetic activity on standing and thus low blood pressure and they are trialling droxidopa for these people in some places and another group that seems to have elevated norepinephrine transporters in their vasculature resulting in too much NE being taken out of the synaptic cleft and predisposition to orthostatic intolerance.Ill see if I can find the study for you. Quote Link to comment Share on other sites More sharing options...
ramakentesh Posted February 15, 2012 Report Share Posted February 15, 2012 http://circep.ahajournals.org/content/early/2011/08/14/CIRCEP.111.962332.abstractHere it is - this study also talked about using SNRIs for the other group. Quote Link to comment Share on other sites More sharing options...
julieph85 Posted February 16, 2012 Report Share Posted February 16, 2012 I'm worried the midodrine is going to make the IST worse. Did he say anything about that? Quote Link to comment Share on other sites More sharing options...
heissovereign Posted February 16, 2012 Author Report Share Posted February 16, 2012 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. Quote Link to comment Share on other sites More sharing options...
juliegee Posted February 16, 2012 Report Share Posted February 16, 2012 ((((((HIS))))) How wonderful to finally have confirmation. So many of us push ourselves way beyond what we should have because our doctors attribute our symptoms to anxiety. Grrrrrr. Fingers crossed that you will fine tune your treatment plan with your new doc. Julie Quote Link to comment Share on other sites More sharing options...
HopeSprings Posted February 16, 2012 Report Share Posted February 16, 2012 Aww, you've been through so much! - I want to hug you. I'm sorry it took so long for you to get a diagnosis (I've been there) - it's incredibly frustrating trying to prove that you're sick and it seems no one will listen. I hope this will lead to some help for you. Quote Link to comment Share on other sites More sharing options...
Katybug Posted February 16, 2012 Report Share Posted February 16, 2012 I am so glad you were able to get the letter and see your real diagnosis! Please don't play the "what if" game with yourself about pushing yourself to keep going. You will never know the answer to that question and really, it won't change anything except that it will cause you needless guilt and stress. And, it is not your fault that the doctors were not helping you. Please try to concentrate on moving forward now that you have something to work with. Quote Link to comment Share on other sites More sharing options...
heissovereign Posted February 16, 2012 Author Report Share Posted February 16, 2012 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? Quote Link to comment Share on other sites More sharing options...
kclynn Posted February 16, 2012 Report Share Posted February 16, 2012 I know there are many very good nurses out there so don't to disrespect them but I have often gotten misinformation from nurses. When you get information from a nurse that upsets you or concerns you, best to get the Doctor's written records as you did. Glad you are getting somewhere. With good understanding maybe you will have more success with your treatments. Hugs to you! Quote Link to comment Share on other sites More sharing options...
heissovereign Posted February 16, 2012 Author Report Share Posted February 16, 2012 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. Quote Link to comment Share on other sites More sharing options...
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