New Kid On The Block

[mallen1]

Amy, thanks! Y'all seem kind-hearted.

Deucykub, I do respect Mayo's research history. They've unquestionably advanced the science of medicine over the generations. I was screwed over by one guy in one department. He's just a guy. And FWIW a great researcher and scientist; I know as I've read his work. He's just a lousy healer. He is a socially impaired two-dimensional lab rat with an MD. He's not alone.

Ernie, 30 or 40 years ago, to circle the wagons was a given. We watched each others' backs and cared for each others' children gratis. There was camaraderie and professional courtesy. No more. I mean, if you're working together I suppose there is. Like the time I took call for a colleague who was in jail on a DUI. But altruism is rare if not dead.

The spine . . . pat57, tell me why you think what you do about spinal cord stuff and its relationship to dysautonomias. I'm very, very curious to know your thoughts. It's been a pet theory of mine for awhile. And Nina and Maxine, you both with the back injuries. Doctorquest - may I ask you as well why you think along the lines you do? I'm not challenging anyone, it is something I'm objectively and personally curious about. 'Just trying to think outside the box as the box isn't being all to helpful!

Steph, Maxine, Mary, and rgt9191 - thank you so much for your compassion and as I said before (I think), thanks y'all for welcoming me with such open arms into your community. rtg9191, I'm just outside of Albany in the woods. You asked where I hailed from. 'Ever hear of a Peter Novak, MD, currently @ U Mass; used to be at Boston City? I'm guessing this following feeling will resonate with some of you. For so long I have felt absolutely alone in the universe with this awful thing that nobody understood and some didn't even take seriously. One anecdote: this spiritually inclined freind of my wife said for me to save myself I needed to find my center and embrace it. For those of you who have seen the film, American Beauty I flashed on the scene toward the beginning and Lester's (Kevin Spacey's) oft quoted line, "The only way I could save myself now is if I start firebombing". Don't even ask my why I flashed on that. It seemed relevant at the time. The spiritual woman stared at me like she was wondering if I was armed. My wife just stared. Oh, to be misunderstood . . .

Sandra, your labs and stuff sound way too familiar to be coincidental. I'm very interested in as much detail as you feel comfortable sharing with me. PM me directly, or if you prefer, I can give you my private doctor's contact info and you could forward it to her, telling her what to keep confidential. If that sounds odd, it was sugested to me by someone else, a frend of a friend who was more comfortable doing things that way then handing his private info directly over to me. Whatever works is fine by me. And my physician - the woman can keep a secret, that I promise you. I'm starved for data and every bit helps, any way I can aquire it.

If I've failed to address anyone's ideas, thoughts, questions, theories, please repost them, PM me or whatever. If I spaced something out it's because I spaced something out. Everything y'all wrote here is gold to me. Again - thanks.

Take Care,

-Mark

[pat57]

look under www.potsplace -causes and mechanisms,

autonomia dysreflexia

http://www.makoa.org/nscia/fact17.html

might be something at this site too

http://www.nymc.edu/fhp/centers/syncope/va...l%20syncope.htm

http://www.nature.com/sc/journal/v44/n6/ab...62DBCFABC90F209

[Rachel]

Hi Mark,

I just wanted to chime in and say Welcome! It is good to have you here.

Rachel

[lostkendra]

Mark - Welcome. I'm still new too and am just trying to take in all the posts. This seems to be a wonderful and knowledgeable bunch of people.

Now that I've gotten that out of the way, I've got a silly question. I know, I know, there is no such thing as a silly question, only an unasked one. (Just to forewarn everyone, I ask lots of simple questions)

So anyways, what does FWIW mean. I can't seem to fit any meaning to it and you have referenced it more than once in your posts.

[morgan617]

It is absolutely essential to maintain some semblence of humor as often as you can Dr. Spacey!!!! Or else you WILL have to fire bomb and it's usually someone that actually does care about you. I speak only for myself and personal experiences, but doubt I am the only one.

I have not had a trauma to my back, but I do have a rather large "incidental" hemangioma that causes L3 and L4 to bulge significantly. I have impingement, spurs, and arthritis all the way down my entire spine. I haven't been able to turn my head to the right for about 15 years. I can't help but think this may have a bit of an effect on me and my POTS.

I also have Periodic Paralysis with probable Anderson Tawil thrown in for good measure. Which, of course makes my OI worse and muddies the waters. My ANA has been elevated for years and whenever I have abnormal labs, they are blown off as not "far enough" outside the parameters for anyone to deal with. Any tests involving any type of prep have either not been done, or have been done incorrectly. I have had 4 cortisol stim tests, with not one of them being normal, and no follow up. I have recently had venous blood gases done in an ER. Venous. I was tested for seizures as an inpatient and my admit assessment diagnosed conversion, before the electrodes were even applied. We knew I didn't have seizures, but my primary was desperate. The neuro could have just stopped at no seizures, but spent 20 minutes telling me how all my attention seeking was destroying my family and I'd do well to get over myself. Some of the oldies here may remember that dark time for me.

I was a nurse for almost 30 years and I well remember the "good old boy" days. They seem to be long gone, with every man for himself. Good and bad, I suppose. However, doctors are still way too insulated at the upper levels. I worked in an office that had a drug dealer for a doctor and when I turned him in, I was in trouble and he got a 12 hour seminar on pain management, he had to pay for...horrors. His practice is still alive and going and I am on disability. So the good old boy does exist in the higher places of judgement, which leaves many of us with poor care at the hands of unsafe practitioners. It was after that particular trauma, I have gone steadily downhill, so I think there are a lot of factors in the causes of or onset of predisposing factors.

I live in a rather smal city, so am pretty much a goner as far as care goes. There are many many great doctors out there, however they quickly become overwhelmed by the patients trying to get away from the other kind. I was denied at Vandy, NIH, and Mayo with no explanations. Also at Strong in New York. I have seen so many outstanding doctors that truly care about their patients, but they are like nurses. They burn out faster than the callous ones. Unable to turn down anyone, therefore constantly overwhelmed. I'm not sure what the answers are...the nurses used to have a saying about some doctors (he'd make a great pathologist, as he would never have to deal directly with a patient) and doctors that sacrifice everything to take care of their patients. There has to be a happy medium somewhere, I just am not sure where it is. We have to remember that doctors are human, and like all humans, have faults and make mistakes. I just sometimes think it would bode well for some doctors to admit they are human and don't know everything. Arrogance is just insecurity in disguise.

Does anyone else feel like me....I have far more respect for someone that says straight out, I have no idea what's going on and no idea what to do, than the one that becomes an instant psychiatrist? I have said my chart reads like a Stephen King novel as opposed to a physically ill person. I should be a serial something or other at this point....maybe in my next life. Right now I will wait for my testing to get back from Germany....you sound like a good doctor, as is doctorguest, and Karyn. Maybe because you have all seen the dark side of patient care, or maybe because you are just some of those "good guys" still left. We vent about doctors out of frustration, but trust me, we don't all have just crummy ones...it only sounds like it...LOL morgan

[doctorguest]

Hi Mark,

I hope I didn't offend you with my comment regarding the good news about surviving the crash and not being paralyzed. A few years ago (it may even be the same plane crash that you were involved in - I am not sure), there was a crash of a small plane with mostly physicians on board who were flying to attend a medical conference. I believe that a majority of them were killed, including one of my mentors - a very well-respected pediatrician and educator. A few physicians did survive the crash - you may be one of those who did!

As to our profession, well, unfortunately, we have all witnessed "the good, the bad and the ugly", both on personal and professional level. When it comes to the autonomic disorders - a relatively new field of medicine and research- there is even more confusion and misconception than in those disorders that have been around for centuries. As such, there is a great shortage of physicians who understand or are interested in learning about dysautonomia. I hope you can find a team of physicians who are both competent and compassionate. Feel free to PM me any time.

[Mrs. Burschman]

But Doctorguest,

Haven't autonomic disorders BEEN around for centuries? Maybe just chalked up to female "hysteria" or some other such nonsense?

I can't imagine our problems are anything new. Just more known, maybe.

Amy

[doctorguest]

Amy, exactly; the autonomic disorders are not new to the general population, but are new as a group of medically-identified disorders to the medical community.

[deucykub]

Hi, Mark:

I'm very glad to hear that your experience with the doctor at Mayo Clinic did not contaminate your respect for their research and medical contributions. They, in particular, have published and conducted extensive research on dysautonomias, including POTS.

A quick search in EBSCOHost pulled up this article: Assessment of autonomic dysfunction following spinal cord injury: Rationale for additions to International Standards for Neurological Assessment. If you've not already read this, it might provide some helpful information.

My health problems began at the age of 10 when I was in a car accident. When the front tire hit an oil slick, the vehicle went out of control, ran into tree, and flipped upside down. I was in the middle, backseat with only a lap-belt and was unconscious for a bit while I was hanging upside down. As far as I am aware, there was no spinal cord injury. I started blacking-out on standing (never a full faint) after that point, which was diagnosed as being "tall & thin." I also have had severe back and neck pain since that day, eventually it evolved (?) into a Fibromyalgia diagnosis. Luckily, it is controlled now with Cymbalta (my wonder-drug). My doctors found bulging discs in my lower back and slight scoliosis when I was 18. I really haven't pursued a lot of different tests since I was in my teens for my back. It's easier just to put up with it for now.

I did have a positive ANA test about a year ago (160:1 titer, homogenous), but my rheumatologist ruled out any known autoimmune diseases. My PCP still believes there is some kind of mixed autoimmune disease affecting me, but again, I've pretty much let that go. PFTs found a high-end of low DLCO (70%/78% adjusted) and mild - moderate asthma (CT showed some lung scarring, not ILD). Arterial Blood Gas showed Compensated Respiratory Alkalosis (however I do not hyperventilate or have panic attacks). EKG showed no abnormal heart rhythms (other than tachy) and ECG only found mild Aortic Insufficiency.

My symptoms are many (my signature is the short list), and after a lot of research, I have come to the conclusion that they are all related to dysautonomia/POTS:

Persistent symptoms: disabling fatigue, nausea, memory and cognition difficulties, chest pain and tightness, cyanosis on exertion, sleep difficulties, often tachycardic at rest, and back/neck/hip pain (FMS/POTS overlap).

Orthostatic symptoms: tachycardia (averaging 140, as high as 180), dyspnea/shortness of breath, acrocyanosis (feet, legs, hands, and lips), palpitations, nausea with some vomiting, disorientation, dizziness, diaphoresis, shakiness, increased chest pain, gastrointestinal symptoms including breakthrough problems and GERD, darkening of vision/black outs, ringing in ears, imbalance, mental confusion, and presyncope with NMH.

My diagnosis is POTS. My doctors and I have not pursued whether or not my symptoms fall into a specific "category" of POTS, such as hyperadrenergic, partial dysautonomia, low-flow, high-flow, etc... I guess after so much testing that once I had the diagnosis with the treatments at this time so much the same, it seemed more important to me to concentrate on getting well rather than trying to really narrow down the cause of my POTS.

However, getting the right diagnosis is so important for peace of mind! Once I knew what I was fighting, I could start to develop my battle strategies. You'll find a lot of empathy on this forum for your quest for a diagnosis as well as the compounding, disabling nature of so many symptoms.

LostKendra, FWIW is, I believe, "for what it's worth." Someone may have already answered you, though. This took a while to type up with my cognitive level on the low side today.

[Tessa]

Hi Mark and Welcome to the forum.

Thanks for sharing. That?s a long process too. But you are not the only one. I can sincerely understand your feelings...

You will find a lot of support here. Feel home.

Take care,

Tessa

[morgan617]

I thought one interesting thing of note when studying up on POTS. Back in "the olden days" it was called Soldiers heart, or something along those lines, so men were involved in the process of autonomic dysfunction.

No one can really deny that diseases that affect far more women than men, will almost always, initially, be chalked up to hysteria, mental disorders, Freudian jealousies, etc. However, it was interesting to note, that even though the percentage of men to women ratios is closer than some things, even men have been historically blown off on this as well.

When my mom had a heart attack, she was sent home, after having been told women don't have heart attacks. Didn't even get an EKG. She had SCD a few hours after her appointment. We have a cardiologist where I live that says he had the same belief system until his sister had a fatal heart attack. She was younger than him. Now we see that more women die of cardiac disease than men. MS was not taken seriously until more and more men starting developing it, and so on.

However, with autonomic dysfunction, even the men are discounted and I can only believe it's, in large part, because of the symptomology of this disease. It mimics anxiety, panic, and other hystrionic type disorders. Therefore, the men presenting with it are starting to get a taste of what it has felt like to be an ill woman since the stone age. Although men tend to be less forthcomong, by nature, I find it as fascinating as I do sad, that with this disease, we are pretty much on equal standings with most doctors, or for that matter, anyone in the health fields, who have little to no experience with this disease. Which is about 95% of the health care field right now.

I can only hope as more men start coming forward and speaking up, more research will be done. In my career, I saw MS go from being hystrionic personalities in women, to a very real disease with positive treatments. We need to make sure the same thing happens with this. There really needs to be more study of the autonomic system in med school, nursing school, the entire health community. There are 4 endocrinologists in my city and not one single one has any idea of what OI is. And they aren't all from here, they are from all over.

I actually talked to one of the specialists on the phone and he stated that he didn't even study the autonomic system in school, at all, and most medical schools still don't study it. It's difficult to hold a lack of knowledge against a doctor that was never taught the subject. That's why I think it's vital to find a doctor open to learning after he/she gets out of school.

The same goes for nurses and anyone dealing with rare, or complex illnesses. If I reached a point where I wasn't interested in learning any more about the specialty I was working in, I went to a different floor, because I realized I wasn't doing my patients any favors with my apathy. But we shouldn't be out of school before we hear about these things....and more importantly, we shouldn't assume because we haven't heard of it, it can't exist....morganwithherusual2centsworth

[Mrs. Burschman]

Morgan,

I'd say that post was worth 10 cents, at least!

Amy

[Michelle Sawicki]

I'm chiming in a little late, but just wanted to say "welcome" and let you know that we do hear from a fair amount of people who've developed this syndrome after an injury. One gentleman won a multi-million dollar lawsuit when he developed POTS after a car accident, which caused neck and spine injuries. As you have discovered, there isn't nearly enough research out there. Things are getting a bit better though, and we have some great physicians like doctorguest who take the time to help us out here. I know you are new to all of this, but perhaps in the future you will be one of those great physicians too.

Michelle

[Sophia3]

Welcome Mark!

Lots of responses for a new person! Shazaam! A male AND a doctor! LOOKOUT.

I can relate to your frustrations even after 17 years of this stuff. I am not familiar with the movie American Beauty but can relate to the old Network Movie..where the newscaster tells people who are fed up with the way things are, to go to their windows, open them up and to yell "I am mad as hello and not going to take it anymore!" But seriously, I have made peace over the years and just taken things a day at a time, an hour at a time or even a minute at a time!

I can remember hearing many mention neck injuries triggering ANS issues but no real specificities. This was in the early years at NDRF boards that people mentioned that...horseback riding accident, snowboarding accidents, etc.

Hope you can fit some pieces of the puzzle together and garner information here and at other sites with Autonomic information.

Sophia

P.S. Sometimes the more I read and learn the more I feel like Tabula rasa should be my nik! (Wikipedia version not the name used on any tv shows!) this is due to the complexities and extrapolations. Just when I think I have something figured out, it changes.

[mallen1]

Doctorguest and all,

Again thanks for the compassionate input. Doctorguest, you brought up a great point about this syndrome having been around for centuries. What is new and may be shifting the epidemiology a bit is the explosion of spinal proceedures over the past generation and the advent of minimally invasive technology and interventional access (through the blood vessels starting at the groin).

I may be part of the problem. I've done research and helped publish a paper on percutaneous vertebroplasty (going through the skin to cement a damaged vertebrae) without ever having heard the word, dysautonomia.

Food for thought and thought for discussion . . .

-Mark

[Maxine]

EDIT.

I removed my post, as it was too long, and I need to collect my thoughts----as I was veering off subject a little-----but not completely......... just put a little more venting in there then usual........................

I'm tired, and having a bad day------so my thoughts are just not in order.

Sorry folks-------------- Just one of those days.....

Maxine :0)

[runningshoe]

Hi Mark,

I have had kind and caring doctors with the best of intentions but still things were missed and details not attended to. It is tiring to always be advocating and learning and asking etc. I am not sure if it is more difficult when you are in the medical profession. Yes, you know more but that can also be frustrating. The best thing I did for myself was track down a top notch psychiatrist who had practiced for many years as an internist. We can discuss the struggles of chronic illness plus he helps me understand my symptoms. I think that not knowing the what and why and how of POTS adds to the uncomfortable sensations and symptoms that come with this illness. I have asked many questions on this forum because sometimes you just want to hear that someone else has experienced what you are going through (such as being covered in goosebumps when it is over 90 degrees etc.)! I am sending you and everyone else healing wishes!

p.s. I wasn't clear what you were saying about dr Novak. I am looking for a 2nd opinion (fresh eyes) and his name was suggested.

[dsdmom]

Lina,

I just started seeing Dr. Novak - saw him yesterday for the 2nd time at UMASS Worcester (not too far from you, right?). Anyway, I really like him and he seems very knowledgeable. He worked with Philip Low at Mayo for 2 years at some point in his career so he's got that going for him too...

Anyway, just wanted to say that I would definitely recommend seeing him if you want another opinion!

[sally]

Hi Mark,

Welcome to the site. I am very sorry to hear about your plane crash, that must have been horrible. I'm happy to hear that you survived such an ordeal. We lost a dear friend of ours in a small plane crash (his plane) in April 2006, his son survived, Thank God. This happened in the Pennsylvania area. We are fortunate that you choose to come here to share your thoughts and wisdom both personal & professional as Doctorguest has done. It is appreciated more than you know.

I hope you find answers and solutions so that you may feel better soon.

Have a Happy Holiday.

[mallen1]

Lina,

Yes, you know more but that can also be frustrating.

Yea, it's a double edged sword. I may know some stuff, but personally, it hasn't been worth a lick in terms of me feeling better. And for me, that's the whole deal whether I'm caring for a patient or sick myself. Sometimes some doctors forget that. Their brain is working on so many things at once that they loose the forest through the trees. They (we) forget that the only thing meaningful to someone sick is not feeling sick. Not, "I just consulted the neuropsychoimmunology geneticist for you" or "I just read a fascinating article that reminded me of your case in the Journal of Obtuse and Arcane Medical Words and Concepts, Sept. 1998".

Having been sick for many years, the only thing I care about is not feeling sick. The rest is window dressing. For now. I sincerely hope that you have your own docs dialed into the reality of your condition and are getting some relief.

Sally,

I'm so sorry to hear of your loss. I've been around small planes my whole life and have lost friends as well. I really feel for you - the phone rings and your life is different forever. Also, thank you for the warm welcome. This community with people like you has been a godsend to me.

I am starved for information. I read every word here with care. Patterns are starting to emerge as my modest brain makes a connection here and there, so please, keep telling your stories. I am a patient man. I've had to become one. Maybe my mission in life is to allow you all to help me so that I can help you. Who knows? I wish I was a fortune teller.

[Mrs. Burschman]

Not, "I just consulted the neuropsychoimmunology geneticist for you" or "I just read a fascinating article that reminded me of your case in the Journal of Obtuse and Arcane Medical Words and Concepts, Sept. 1998".

You're really funny! A doctor with a sense of humor. We love that around here!

Amy

[morgan617]

Mark, when I was in nursing school, around 1862 or so , I happened on an article I found very interesting. A week or so later, I went to see my sister and she was telling me all about how her fingers turned all blue and red and white.....oh my gosh. A week earlier, I had read this little bitty article about Raynaud's.

I immediately diagnosed her and she thought I was the smartest person on earth, as she had been to 3 doctors for it. She was subsequently diagnosed with Sclera Derma, but your words just reminded me of that that little article in some arcane obtuse magazine I happened upon.

Of course, reading about it and fixing it just aren't the same are they!!!! I used to send my doctor every up to date and spot on article I could find, and it hasn't helped me yet, so I stopped. It IS all about feeling better, not just knowing the mechanisms. I don't care what causes it, just get me over it.....my brain used to be a sponge, now it's a swiss cheese factory, so just make it better....

[runningshoe]

Hi everyone,

I really wish there was a way we could all meet. We could sip salty broth and munch on salty pretzels while reclining by the fire (fan blowing on us of course to keep us from overheating), while sharing notes and dr stories (did I ever tell you about the time...) and cheering each other on and maybe solving our health puzzles....Sounds good huh?

I am still very much in search of information. I think my stuff is hormone related so I don't think my story will teach Mark very much.... Except that I understand what it feels like to feel like **&^!!$.

I recommend the book How Doctors Think by Jerome Groopman.

Sending healing thoughts,

Lina

[mallen1]

Lina,

Most everything I know about whatever it is that's wrong with me I've learned from listening to peoples' stories. I would very much like to hear yours. It helps me immensely, it's hard to explain, but it does. If you ever feel so inclined you will have a dedicated audience, I promise.

Take Care,

-Mark

[pat57]

Hi Mark,

check out the "stories" link.

http://www.potsplace.com