hyracinth

I am from Washington state and my doctors are at OHSU. They are very good. I was able to have a QSART test there. I don't think there are any other places close to us that do the QSART in order to diagnose dysautonomia. I was diagnosed two years ago. My doctors there work as a team to address all my needs. Each doctor has full and complete access to everything that each other doctor is doing. It is very efficient and effective. The doctors I have treat me wonderfully and never make me feel bad about myself or the disease. They all took me seriously from the start and are available whenever I need them. They also look for underlying causes for the dysautonomia in the event that there is an underlying disease that could be treated. I am very lucky to have found them.

Feel free to ask me more questions if you want.

Thanks.

Hi, DYSarray

I looked up this QSART test and do not understand how this sweat gland test can diagnose Dysautonomia, I know I do not hardly sweat at all. (lol) Maybe you can explain this somehow. My daughter is a critical care nurse at the neurology department at OSHU. So Maybe I should ask her, but she is mostly into nursing critical ill patients. I see they have also a better neurological department testing department also then in Washington State?I did a sniff test and it showed diaphragm paralysis. My pulmonologist said it was a neurological disorder. But still want to go ahead with Thoracic Surgery: Video-Assisted (VATS)

At OSHU this is the link of the test Autonomic Testing/Qsart

It looks like at OHSU they have way more information about neurological disorders, the neurologist did not even want to test my diaphragm paralysis.

Thank you so much for this information, I hope you are getting better. Yes you are very lucky to have found them? I believe with my Medicaid I will need to move to Portland before they will treat me? or am I wrong? Hyracinth

Hi hyracinth, I am from Washington State too, and so sorry, but good darn luck! I have been fighting this machine for several years now. If you are younger and able, I highly recommend you go out of state, to one of places listed. I have terrible luck with them too, but others have done quite well.

I happen to have a really good primary who has stuck by me for 26 years and believes me and takes very good care of me, but he is brilliant and admits I am the patient he will never get over. I don't know what part of washington you live in, but I know the universities aren't great. We took our son to OHSU and had a pretty good visit there, and it's only 5 hours or so from Spokane. Out of state, but If you archive you will see I have done about all there is to do here.

I'm a bit flumoxed about the tilt. You might get a second opinion from an EPS, but few of them know more than the basics about OI around here and will defer you back to your primary after they do the test.

Sorry to be a downer here, but I've been trying for 8 years to get adequate help from people besides my pcp and HE Has tried to get help for me. This is just not a pregressive state for these kinds of illnesses.

You can pm me if you want.....morgan

Hi, Morgan617

Yes, I have found out that it is hard to get a diagnosis for syncope in our state?. I see you live in Spokane.. Supposedly there is a good cardiology hospital there. It even does heart and lung transplants.

You would think they would have some good other good medical personnel and equipment.

I do not know what the EPS and the OI stand for? I searched all over the internet?. I have had an EMG sudy but they only did this on my right arm and leg, the neurologist did not want to touch my diaphragm muscle paralysis. It did show I had peripheral neuropathy in my legs

Last Friday I went to the pulmonologist again, he found that my CT scan was worse than two month ago and now want to do video assisted thoracic surgery, I have gone through this before with another cardiologist saying it was to dangerous for me. But this time it looks bad enough that they are actually going to do it.. But I have another cardiologist. Who has not experienced my syncope?s, low blood pressures and awful reactions with anesthesia.

Tomorrow again I will go to this cardiologist trying to get a test done for my syncope?s I cannot live like this and worry that other doctors can make it even worse for me.

Thank you for answering me, I will get in contact with you soon I have been so busy with being sick and going to doctors and also my life?Hyracinth

With orthostatic intolerance and known interstitial lung disease this condition comes to mind... I'm no doc or anything and I could be way off base, but it's one of the things that half-stuck for me (but isn't super likely):

http://ghr.nlm.nih.gov/condition=alpha1antitrypsindeficiency

The "false positive and negative" thing with TTT is a valid concern over the procedure but in my opinion a doctor should simply take it in the context that any other clinical presentation... look at the *whole cluster* of symptoms. If you have several other common POTS symptoms and a positive TTT that's how a diagnosis is made (provided other more clear causes have not been identified). One is not asking a doc to look solely at the TTT. In their terms, the TTT has poor selectivity and sensitivity... but the TTT combined with analysis of symptoms is better and is what the doc should use to make the call. But basically you just have to shop for a more open minded doc.

Have any docs mentioned fludrocortisone? I don't know if it's contraindicated due to any of your known conditions, but perhaps it is a possibility. It can help some people at least a bit.

Hi, Erik I do not have COPD but I do interstitial lung diseases and getting worse by the month. I also do not have any problems with my liver. I have had many blood test done but do have high amonia in my blood. which is strange.... with no liver desease. Thank you for the suggestion I looked through the whole article and knowledge about everything is always good. Sorry for replying so late, I had a very hard day on friday and syncope on saturday... and could not write very well back..I am also trying to figure out this forum on how to post I do not seem to put the usally html tags in.. thank you again hyracinth

Getting a dx requires one thing above all else: persistance! Pots is not well known or particularly well understood, and getting a dx takes time and perseverance. I am fortunate enough to live close to great doctors, but even in my case it took nearly a year for someone to guess that my symptoms were not in fact unrelated, by reflected autonomic failure. If your current doc won't send you for a tilt, ask for a second opinion. Syncopal episodes can occur for a wide variety of reasons, some of which are quite serious, so don't let your doc blow you off. A cardiac nurse told me just this morning that syncope is starting to be viewed as a much more serious and important symptom, so don't settle for it being dismissed! Hang in there!

Sandy

Thank you, Sandy

I do not understand that they put you in the hospital right away, when it happens in a medical facility. Let you go home with not anything done. Last time I fell on my oxygen tank right inside a medical clinic.

My partner is so anxious with anything I do that can cause some kind of fatigue. One time they wanted to do a test in the house with a monitor that I had to push if I was going to have a syncope ( all I know I feel warm all over me and I am gone, my partner pretty much got to scared. They did find I had. bradicardia, Tachycardia To be home alone is becoming scary and what if I did not have a partner. I did not have one with my heart attack this was already amazing I got help somehow. I am just afraid with the syncope?s that I will get hurt someday. I still have a bump on my head from the last syncope. Tomorrow I have to go to Virginia Mason again. I will see two doctors and have breathing test and will have a CT scan. I will have to leave at 9.00 a.m. in the morning to be there at 11.00 am. I am scared getting fatigued as it always happens at those times.

Thank you for responding, hyracinth

Hi, All I am a Newby

I have not been medical diagnosed with Dysautonomia, actually I never heard of POTS until someone posted this site in another group. I was not looking for this at all. I need answers for some of my medical problems. I know some of them like heart disease, Fatigue, interstitial lung disease (with no known cause yet besides that I have alveolitis and need to use oxygen)and Peripheral neuropathy and they found my that diaphragm during a sniff test is functioning appropriately on inspiration, expiration. But the diaphragm function is extremely limited. All of these symptoms with no diagnoses it almost makes me feel like I am some kind freak.

I know my blood pressure and heart rate are very low at times and sometimes very high. I have Tachycardia and bradycardia , My former cardiologist says I am one of those heart patients that need more salt in their diet, and drink water as much as I can which I do. Before I got a heart cath or do any other procedure he wants me in the hospital the day before to get hydrated. So my blood pressure does not dump. But on the moment I have an appointment with another Physician who does not know I end up in some terrible situations because of the anesthesia which drops my blood pressure to low. And my former cardiologist does not work anymore.

I used to be dizzy a lot but for a halve a year I have been having syncope?s which horrible chest pain after wards. No one can find a real diagnosis for me. Finally I got my PHP to make an appointment with another cardiologist when I asked for a tilt table study test. She showed me that a tilt test study would not make sense since it would cause false and positives and false negatives. Or How do I convince a the cardiologist I am referred to do the tilt table test since it describes it here as working well , thanks to Nina http://www.dinet.org/how_is_pots_detected.htm

Even though she sent me to the cardiologist she does not believe he will do anything. From your website I found no one in my state is specialized in Dysautonomia in my State. So how does one get a diagnosis or even a test to help me? The PHP says I just have to live with it, but when I have a syncope in public or a medical center I end up in an emergency room and stay overnight with nothing done besides that they tell me I have an anxiety disorder. But I never have anxiety at home except after these syncope?s. The last time they put me in a bed and never let me out for over 24 hrs until they rolled me in a wheel chair to the car. And there are no doctors who know about Dysautonomia in Washington State.

I do not know where to ask for help anymore and I am very tired of being send of into the hospitals after a syncope. I need answers and I am at once hopeful I can get them through your site. Thank you, hyracinth.