Introduction

[medicalenigma]

Hi everyone!

I am new to the forum but not to symptoms of dysautonomia ;( For many years (too many to count), I have suffered from chronic tachycardia, palpitations, crippling mental and physical fatigue, gastro problems- chronic nauseau, inexplicable stomach pain, headache, cognitive problems, high blood pressure, exercise intolerance, intolerance to extreme temperatures, dry eyes, anxiety attacks, chronic infections, cerbral hypoperfusion, and the list can go on..... These symptoms were diagnosed as consistent with chronic fatigue syndrome/fibro and chronic lyme disease. For years before that, I was told these symptoms were psychological and I was even misdiagnosed with some psychiatric disorders and hospitalized and now suffer PTSD from the mental health community.

Most recently, I was tested at mayo clinic in AZ, where I live, for dysautonomia and I just found out testing revealed orthostatic intolerance. The dr is requesting specialized blood work to look for things like catelcholines (sp?), paraneoplastic antibodies, and some other tests that will be sent to mayo rochester. The name given to my condition was simply orthostatic intolerance, however I believe he means POTS as I have all symptoms. I am also supposed to undergo testing by my gastro at mayo for gastroparesis.

In addition to the CFS, lyme disease, and also hashimotos disease, I recently had a spinal cord injury and has major surgery... i feel the spinal cord damage worsened underlying autonomic issues.

Anyway, as I am glad to have a name for this, I am also sad to find out there is no "cure". It has gotten so bad, I cannot even sit at my desk for long periods of time without feeling "spacy:" and my heart banging away. To add to it, I live in a very hot climate and the heat is making me so much worse (I moved here from NY to escape the cold due to my thyroid disease) but now the extreme heat is killing me. I used to love the heat and outdoor activities, esp because AZ is so geared towards them and one of the many reasons I moved there. Also, I have been on disability for 4 years and I cannot see myself returning to work with this level of mental and physical fatigue and other debilitating symptoms.

I am so glad I found this forum. I hope to gain some much needed support from this forum and be a support to others, as well as find some useful information and resources on how to manage this disorder.

Thanks for listening!

-NJ

[Megan]

I just wanted to welcome you! It seems like you've had quite a difficult time. Hopefully the blood work will give you some answers and help you figure out what you can do to ease symptoms.

Meg

[flop]

Hi MedicalEnigma,

welcome to DINET and the forum. I'm sorry that you have a reason to need to join us but please make yourself at home - we are generally a friendly helpful bunch. There is lots of information on dysautonomia and POTS on the forum but also on the main DINET website which is well worth a read.

It sounds as though the doctors at Mayo are testing for dysautonomia problems - I hope you find the support and information you need to help you understand what is going on with your health at the moment and how to best help yourself and your doctors get you as well as possible.

Flop

[medicalenigma]

What are those blood tests for?? I know one looks for cancer. do you need those blood tests for confirmation of POTS or are they looking for causes?

thanks!

Edited May 29, 2008 by flop
Quote removed, please use "add reply" button at bottom of page

[flop]

Paraneoplastic does indeed mean "related to cancer" and some people experience autonomic problems as a side-effect of having a cancer, but that is very rare indeed so they are probably just doing the test for "completeness".

Catecholamines are the chemicals (hormones) that the body uses to signal the autonomic nervous system, they are made and released from the adrenal glands and parts of the brain and nerves. Epinepherine, norepinepherine and dopamine are examples of catecholamines. If the balance of these chemicals is wrong then the autonomic system won't work properly. Again these are tests that are often normal in people with POTS. Some doctors measure the different levels of catecholamines during rest lying flat and then again during a tilt-test to look to see how the body responds to the stress of being upright. If the catecholamine levels go very high when upright them it suggests a hyperadrenergic response.

Hope that lot makes sense, some of the tests can be very technical. The most important test though is the tilt test by far - that is what would show the increase in heart rate that would lead to a diagnosis of POTS or other forms of orthostatic intolerance / dysautonomia.

Flop

[momofsara]

Welcom to the forum, you will find many friends and much information here. Good luck with all your tests. Hang in there we are all here for you.

[Maxine]

Welcome to the forum!

I'm sorry you had to go through so much to get your diagnosis. I know many people who have been given the psyc. diagnosis. Some people have actually had themselves admitted just so they could be in the hospital because they were so scared they were going to die, as they didn't have any idea what was wrong with them.

Just keep in mind that studies have shown that we----(yes, those of us with ANS dysfunction/POTS), are actually better with coping, and are actually less anxious then the "normal" control subjects. We have developed coping mehanisms dealing with this, thus leaving us with a stronger constitution. However, some of us have been tested to no end, and I can certainly see PTSD happening to a lot of us. You can heal from this, and be stronger yet--- I believe in that saying, "what won't kill you, shall make you stronger."

Takes things one step at a time, and don't let anyone kick you down.

I know what it's like to lose pieces of myself, but have found a way around it. I went on disability last year, but actually filed in 2004. I really wanted to go back to work, but the same thing happened to me------just sitting up too long was rough. I haven't worked sine 2001, after working almost 22 years. I miss it, but I don't stress about it. I won't tell you how rough it was trying to get my disability, and the terrible abuse I received from some of the medical community during this process.

I know you will find a lot of friends here, and you'll find that a lot of us have been in simular circumstances. I wish you the very best.

Maxine :0)

[Ernie]

Hi,

Welcome to our family.

You will make many friends here.

[Rachel]

Hi NJ,

Welcome! I'm glad you found us. I hope you find lots of help, information, and support here.

Rachel