lotusflowersusan

I suspect that I have had ANS dysfunction symptoms most of my life. I was diagnosed with PTSD in my late twenties. I can totally relate to the frustration of having symptoms attributed to anxiety, especially if you have a history of a diagnosis like PTSD. This has been a topic that interests my therapist and we have discussed the possibility that my (suspected) ANS issues actually made me more susceptible to the anxiety response in PTSD. The mind and body really can't be easily separated, though many in the medical community would like to think so. What happens in the body effects the mind and vice/versa. To me, a holistic approach, where the mind and body are seen as part of a whole, would do us more good than trying to always pass us off as 'crazy'.

I had my autonomic reflex screen on Tuesday and got through it okay. Something that occurred to me, though, was my issue with involuntary muscle twitches. I was laying on the table, not moving much in order to get as accurate results as possible, and experienced these twitches mostly in my legs and arms, but other areas as well. This is not the first time this has happened. I have always been a fidgeter, and the only way I am able to be still is to concentrate entirely on not moving, the problem is when I do this, my muscles start twitching, like my body is telling me I have to move. I notice this particularly when I have to be still for various medical tests such as imaging where it is very important to be still. Just wondering if this is familiar to anyone, or if you have any thoughts on this. My docs always notice all of my movement and was initially referred to a neurologist for assessment. The neuro could not come up with anything. I am waiting for the results of my testing, and therefore waiting for a diagnosis, but my suspicion is that this could be dysautonomia and my body trying to keep me blood flowing.

Hi All! Just an update, I had my testing yesterday, and posted an entry on my blog with a somewhat detailed description of the tests that were performed for anyone interested: Susan's Blog

I am seconding Meg's comment about having your thyroid checked if it has not already been ruled out. I had very similar symptoms before I had my thyroid removed (and now have the lovely scar, is that what your grandmother had?). I had a goiter (not noticeable to the casual observer, only noticed by doc palpating the thyroid) that was pressing on my esophogus and causing me to fill like I had a continual lump in my throat. I also had some of the voice problems (have done some singing myself). I also remember the surgeon being very gald that I could still talk after he removed my thyroid, because the thyroid is very close to some nerves involved in voice. (yes, very technical explanation ) May be more dysautonomia than thyroid, but I saw a lot of my symptoms in your post.

Sending thoughts your way.

I am glad to see this topic. I am one of those who has had both positive and negative ANA results and docs have not yet been able to put it together. I know the ANA can indicate a number of different things, often indicating some sort of autoimmune issue. I do have Hashimoto's, and the docs sometimes suspect lupus, but remains a mystery.

Thanks to everyone who took the time to read and reply to my post. The more I read, the more I see myself in the stories of others. It is interesting how many different ways there are for ANS issues to present, but all-in-all, the stories are very familiar. When my internist started looking at the list of possible symptoms for dysautonomia, she remarked that I reported almost every single one. She has been most interested since I started seeing her about my constant movement and fidgeting. We discovered that dys can also explain that uncontrollable urge to move constantly, possibly due to low blood volume. I also sweat buckets and run a consistently low body temperature. I told her that it seems like I spend a lot of conscious effort trying to maintain homeostasis, and she acknowledged that this seems like a very strong possiblity. Thanks so much! I will let you know what I find out.

Just wanted to share with everyone that I seem to be making diagnostic progress, and have a TTT scheduled for April 15. I am excited and a bit nervous. My internist is unfamiliar with dysautonomia and was unaware that the teaching hospital where she works even had an autonomic laboratory. But she was fascinated with the info I provided, and she had no problem making the referral.

Good Luck. I will be sending positive thoughts your way.

I haven't had the TTT (yet), but am working to be referred by my Med Center internist to one of the two ANS neurologists there. UNMC does have and autonomic lab (I was next door to it for my EMG last week), so I am hopeful I will be able to get the appropriate testing soon. Just a slow process. Thanks for your reply!

mkoven, I could have written your post just about word for word (except I won't be 41 until July). I recently had my annual exam, along with pelvic ultrasound to follow up on cysts (functional) and no explanation other than age (pre-menopause) could be offered for the fluctuations in cycle length, but definitely should be followed up with your doc.

I don't live in Kansas, but know what you mean. I am a neighbor to the north in Nebraska and have not yet found others locally (even though I signed up for the meet others program). I have not received a diagnosis yet, but did have the good fortune to be referred by my local doc to the University of Nebraska Medical Center in Omaha, and feel like I may be making progress towards the diagnosis. It is always good to meet a neighbor... feels sort of lonely out on the plains sometimes.

I do get these symptoms in addition to the dizziness/lightheadedness, and occasional fainting.

Hello everyone! I am new here and I wanted to take some time to introduce myself and hopefully get some feedback. I suspect that I have had some sort of dysautonomia going back to childhood, but am just now aggresively pursuing a diagnosis at the age of 40. First, I am wondering if anyone else has had similar experiences: Throughout my life I have had odd reactions to what other patients tolerate easily. Some have written me off as too sensitive or been in some other ways demeaning. As I seek a definitive diagnosis and have discussed my travails with family and friends, my mother reminded me that as a child (and still to some extent as an adult) I did not tolerate blood pressure checks well. They would make me nauseous, light-headed, and just plain ill feeling. Did not think much of it at the time, but seems to be part of a pattern. I have always been very sensitive to smell, and can be easily overpowered to the point of nausea, vomiting, and headache if I am confronted with some strong aromas. I remember this as far back as grade-school age, probably 9 or so. I had my first grey-out when I received a booster shot prior to entry to junior high. It came on 5-10 minutes after the injection, but I was blinded after getting up and exiting the clinic, and my mother accused me of messing around as I tried to feel my way out of the waiting area. My first faint actually came when I was fitted for contact lenses as a teen-ager (again, several minutes after the actual event). It was totally unexpected on my part. I have had faints or near-faints on numerous occasions, frequently, but not always, related to a medical situation. MDs generally blow this off and mutter something about vasovagal syncope. I have since explained to people that I can have a fainting reaction to anything that my body interprets as a violation to its integrity. To me, dysautonomia seems a more likely explanation than a 'fear of needles' since I don't know exactly which situation will bring it on. It seems more like my body is not reacting correctly to an unexpected stimulus. Something out of the norm. Just wonder if anyone can help shed any light on this. In 2004 I was diagnosed by an infectious disease specialist as having an active and recently acquired Epstein-Barr infection. Ever since I have felt like a mess. I have lost approximately 80 pounds, which I needed to lose, but can't explain what I did to lose it. This is what has primarily peaked the interest of several of my physicians. Episodes of near-fainting have escalated since this time. It wasn't until the EBV in 2004 that things seemed to get really out of hand. Despite being significantly overweight, I had a regular and vigorous exercise program. I had a thyroidectomy in 2001 and a routine evaluation of thyroid hormones indicated I was VERY hypothyroid (which would normally cause weight gain, not loss). For a while, my symptoms would be written off to the thyroid or EBV issues. But here we are, and instead of improving, I feel I am getting worse. My symptoms are varied, but the most distressing are the heat intolerance, dizziness, near-syncope, muscle weakness, some pain, and difficulty breathing. I have been diagnosed with IBS and have frequent GI pain, and acid reflux. I have also had, throughout my life, the tendency to fidget a lot and it seems somewhat uncontrollable unless I concentrate entirely on Not doing it. I have consulted with various specialists aside from my internal medicine/PCP and the infectious disease specialist: rheumotology, neurology, endocrinology, cardiology, gastroentorology, gynecology, even ophthalmology (corneal ulcers). I was hospitalized overnight in October with chest pressure and shortness of breath and a very mild elevation of troponin. I received a fairly thorough cardiac evaluation at that time that indicated my heart is in good shape. I have since had a pulmonary function test that indicated the same about my lungs. I was written off by some as the episode being due to anxiety. Having a psychiatric history, I had my therapist and psychiatrist forward all of my psych records to my current internist who is coordinating my testing at the Nebraska Medical Center. My reason for including my (fantastic) psychiatrist, was that she felt my symptoms are NOT due to my psych issues, and I wanted to nip that notion in the bud with the internist. That strategy seemed to do the trick. The internist actually felt my shortness of breath was not likely a lung issue or even anxiety, but was related to my muscle weakness. I see a neurologist to evaluate this issue on March 4. I have seen this particular doc before and like him. I would like to approach him with my ANS suspicions when I see him and could use some guidance. Due to my medical phobia, I get very anxious in a medical setting, and many docs are willing to write off ALL symptoms or problems to the anxiety that I exhibit in their presence. The phobia developed as a result of my earlier dealings with docs with the faints, near-faints, etc. I know this is lengthy, so thanks to those who took the time to read. This looks like a fantastic forum and I look forward to hearing from and getting to know others out there who have been there.