metoo

Morgan,the only thing I can tell you is that I had a very determined PCP who believes in me and fought very hard to get me in.I had a long wait.I was accepted at Mayo in Nov. 2003 but was not given an appt. ,just put on a waiting list.At that time I was told it would be no later than Feb.2004.Feb. came and went with no word so I started calling them every week asking about the status ,where was I on the list.I finally got in April 22.I did not have any dx at the time,my neuro thought I was having emotional or mental problems,rheumo dr told me fibro and there was nothing he could do for me.I had been tested for every disease known to man except for autonomic testing.I had been told I had Lupus but 15 years later found out I never had it at all and then MS early stages.Am I ever glad that one was wrong too!If it were not for my PCP,actually a PA who is very young,I don't think I would have gotten in.He called,told them all the test I had,my symptoms and how they affected my life and that he was at a loss as to where to go next in dx's me,could they offer any advice.That is what did the trick.I don't know why you can not get in because of the CF.They were great while I was there.I had a 2 hour initial consult and testing started right away. The only thing that upset me at all while I was there was the fact my DR could not see me before I left.They set me up a appt for a phone consult and I left not knowing anything.Dr called me a week earlier than my appt tho and took an hour to go over each test and DX and answered all my questions so it all worked out ok.I am sorry you can not get in.I would try again and have your dr stress your problems and why you need to be there.Good luck,I hope things work out for you,Melanie

Hello,I had my follow up with Dr. Fealey from the Mayo Clinic and finally have a "name" for all my symptoms.I have POTS.As crazy as it might sound,I am so relieved to finally know.I have went thru 17 years of misdiagnoses,Drs telling me I am crazy,depressed or have emotiomal problems that it is such a relief.I have hope again,something I have not felt in a long time.With the POTS he also dx me with Fibromyalgia,Chronic Fatigue and dry eye syndrome which "might turn out to be Sjorgen's" as well as bladder problems.Is it crazy to be so happy about being having all this?Not that I am happy to have it,just happy to know! Thank you all for your support and information you have shared on this board.It has helped more that ya'll will ever know.Take care,Melanie

I was in 26 minutes,the tech doing the test had told me before the test started it would be at least 45 mins.,maybe a little longer to get my body temp up because I was cold.My temp going in was 97.6.

This may be a crazy question....any one who has had a sweat test...how long did it take for your body temp to reach the level where the test is considered complete?Thanks!

Hi,I got home last night from my Mayo trip.I still don't have a concrete dx.After finishing all my test I went back to see the Dr and get my results but he could not see me until next Thursday so I set up a phone appt with him.I just hope he doesn't decide I need more test and want me to come back.I hate flying,it seemed to make everything worse as far as my symptoms go.I feel pretty sure they did every test known to man already,If you take every test I have ever had together they would not add up to what I had there in 4 days.He did tell me he was sure I had autonomic problems and possibly Sjorgen's so I will just sit here and wait and hope everything turns out OK. Melanie

Hello,I made it to Mayo.I had several test yesterday,the tilt table was the first.My HR went up to 148 almost immedately.I stood for approx 7 mins before they laid me down.I am going for my sweat test in a few mins.They are very nice and extremely thourough here.They are also looking at the possibility that I have Sjorengs's.melanie

I am leaving tomorrow morning to go to Mayo Clinic.I am so nervous and upset,it is making all my symptoms worse.I have 3 wonderful kids who are so upset that I am going away and it is making it so hard for me to leave them.My husband is staying with them and that helps but they are used to Mom always being here for them.I just hope that this is finally going to be the end of my long road of unexplained symptoms and misdiagnoses.I have been through quite a few of them in the last 18 years! The Mayo Drs have already looked at my med records and came up with dysautonomia.I am hoping I will be relieved at finally knowing what it is but to be honest,from all I have read I really don't want it! I guess I was hoping that when ever they finally put a name on it I would be able to take a magic pill and it would all go away.Well,I will quit whining.Everyone take care of yourselves.Thanks for listening,Melanie

Hello,I have not had any test yet,I am going to Mayo next week.I do know if I stand for approx 10 mins my heart goes crazy,rapid heart and palpatations ,my neuro did a poor man's TTT of sorts,had me lay down first,then sit,then stand but did the BP immedately,no pulse at all.All together it took less than 2 mins.There was some change to my BP,it went from approx 120/80 laying,130/90 sitting and 150/100 standing.If I get hot my symptoms are so much worse and almost immedate.I take cold showers,keep my bedroom window open no matter how cold it is.My husband,bless him,is understanding about it all but I know he is tired of having to get out of bed at 5 am in a bedroom that is 40 degrees.I think heat intolerance is my major problem,more than standing up.It produces more symptoms faster.Most everyone talks about low BP,mine seems to go high.Is this still a dysautonomia?Also has anyone had the sweat test?They are planning on doing one on me next week and I am scared to death.I know I will get very sick when I get hot.If anyone has had one please tell me what to expect.Thanks,Melanie

Hello,I have been lurking around for a couple of months,reading post and learning everything I can about dysautonomia.I am not officially dxed yet,it has been a long road that I am hoping is almost over.I have had problems since my late teenage years but within the last year they have progressed to the point I can not work.I am 35 now and grateful that I had my child and career while I was able.Hopefully I will be able to return to work,I was a hairstylist with my own shop.This all started with severe heat intolerance when I was 16. I had been working outside in the sun and got extremely sick.Couldn't stand up,numbness in my arms and legs,slurred speech.The ER dr told my Mom it was heat exhaustion and to keep me out of the sun.Things progressed gradually,my heart rate and BP would go really high for no reason,I wore 24 hour monitor and had ultrasound of my heart,both showed abnormalities but the drs in my small town would just shrug their shoulders.My PCP was convinced I was depressed and that was all.His famous saying was "Do you feel bad because your depressed or are you depressed because you feel bad...I think your depressed"ARRGH My OB/GYN was the one who ran all the test ,he knew something was wrong.By this time I had 3 miscarriages,my OB did blood test and my ANA was really high,he though maybe Lupus.He sent all the test results to my PCP who wouldn't even talk to me about them,refused to acknowledge I had clinical proof of something other than depression.I finally had my son and quit going to the DR.Then it hit with a vengance.I would be working,doing someones hair and just fall,be really sick and just lay there in a pile of hair clippings until I felt better.People don't like this...it sorta scares them!I found a new PCP who is wonderful,he advised me to quit working to let my body rest,I was tired all the time and could barely function and I now know in my own mind that my work was not as good as it should have been.I just couldn't think anymore.I realise now it is Brain fog.I am going to Mayo April 22 for testing and hopefully have some answers.I am sorry this is so long,I had just planned on introducing myself and saying Hello to all and Thanks for being here,but stuff just started pouring out.I feels good to get all this off my chest.Thanks,Melanie

Hello everyone! I have been reading the post for quite a while now but this is my first post.I am not officialy dxed yet,my Neuro (who thought I was crazy...I will be finding a new one as soon as I come back from Mayo) faxed all my records to Dr Low at the Mayo and Dr Low told him I had dysautonomia and needed testing.I just had to add my experience in using the phrase "autonomic nervous system disorder".I had been fighting with my insurance co to get a visit to Mayo approved ,they decided I should go to Duke or UVA instead.OK..I call and ask for the Neurology Dept at UVA ,got the appt secretary and asked what types of "autonomic nervous system testing" they do there and she repleies ....OH,you have the wrong dept. let me transfer you to psycharitary I had to explain that it was not type of nervous system,it is the one that controls heart rate and BP but she still wasn't sure what I meant.Now ,they may do them,may be great at them ,maybe she just wasn't sure what I was asking about but I got back on the phone with my Neuro and PCP and now my appt to Mayo is approved. I am going April 22.I will not be using the nerouus system part of it any more!