New Kid On The Block

[mallen1]

Well, not a kid actually.

I'm a 45 year old guy who managed to be in a Learjet that crashed on takeoff several years ago. It mangled my back and I have the scars to prove it. It's been over five years since I underwent the last of four spinal surgeries (the first two were bungled, the last was a fusion - long story). Basically, I've been ill ever since. I'm not saying that one thing caused the other, only that they are related in time. I'd be fascinated to know if anyone else experienced a correlation with the onset of thier symptoms and some type of back proceedure and/or injury.

I carry 14 or so uncoordinated diagnoses over my shoulder like a bag of bricks which is mildly annoying. It bothers me as a scientist and biostatistician and drives me nuts as a patient. Let me run the list of signs and symptoms: orthostatic intolerance, inappropriate sinus tachycardia with palpitations, dropped beats and multiple PVCs (premature ventricular contractions - not necessarily a big deal), profuse sweating episodes and labs indicating the presence of adrenaline 10 to 13 times the upper limit of normal (on three separate occasions, two different labs). This sent me on an incredible odyssey, hunting for a pheochromocytoma (a tumor of the adrenal gland). They were sure. Absolutely. By now I have a bevy of endocrinologists in tow. I'm dispatched off to the Mayo Clinic in Rochester. End result: nothing. I have anxiety (well, yea) and the lab results: laboratory error. See ya!

What else - in no particular order, B12 dependent (IM) pernicious anemia, fasting hyperglycemia or hypoglycemia- never normal, resting BP where the bottom number oscillates from the 40's to the 90's given the day, low thyroid with an uncoordinated feedback loop (inappropriate TSH response for the technically inclined), chronic pain, malabsorbtion, multiple wierdo autoimmune irregularities that come an go, e.g. Lupus Anticoagulant (which does not indicate lupus), antiphospholipid antibodies, insomnia, depression, bloody tired all the time, no appetite . . . there's more, but I'm spacing out so I hope that I've painted an relevant if incomplete picture.

The concept of hyperadrenergic dysautonomia is one I had never heard of until a month or so ago, despite having spent the better part of the last eight years in doctors' offices. I don't truly know if that diagnosis applies to me. What I do know is that one or two of these things I could deal with. Dogpiled like this, it's destroyed me. Sound familiar?

There's a lot about me other than this condition, but I don't want to bore anyone who has been kind enough to read this far. What am I searching for? Logic, rationality, compassion and perhaps a physician who can see a pattern in this chaos so as to take the next step and help me to feel better. And hey - thanks to all you folks for creating this space.

Take Care,

-Mark

[pat57]

I know there is a relation to some forms of dysautomia and spinal cord injuries or spinal stenosis. I have to be general like that because

I am no expert.

Welcome aboard. We, as a group, do pay the college funds for the Drs. children with the years long process of diagnosis. I see you are a big contributor.

Improvement is possible with DX and treatment, so hang in there.

[MightyMouse]

Mark, I probably have a genetic collagen defect and have had some symptoms since early childhood; sweating and problems standing--which made folks think I was hyper mostly because my body figured out for me that if I kept my legs moving while upright, I wouldn't feel so terrible.

I did have a major spinal and head injury at age 10--I was in the first car hit by a drunk driver in a 5 car pile up. Our car was the only one completely ruined, and looked like an accordian. I was thrown into the back of the front seat with pretty good force (the car didn't have seatbelts); ruptured the disc at c5-6 which was not identified as gone until almost 30 years later when they went to go remove the thing and found there was no disc at all. I also had a failed fusion with an allograft (donor shin); the graft collapsed and I then had an emergency autograft (the hip bone's connected to the neck bone). I have all the stuff that goes along with spine trauma: persistent pain, spasms, shooting electric sensations, numbness and tingling/itching, and weakness in a few muscle groups.

I'm 43, but was dx'd w/ dysautonomia in my early 30's. I have odd findings with my antinuclear antibodies (ANA) but have never tested positive for any specific rheumetological disorder. I have severe allergies to tons of things, including all antibiotics save one... (used to be two, but the FDA just black-boxed one of them b/c of kidney toxicity and deaths). I was dx'd with celiac/sprue along the way too... and more.

I think you will find that there are many folks here who share your oddball symptoms--those are pretty much the norm here.

Nina

[mallen1]

Pat,

Yes, I'm contributing to the Global Fund! On the other side, I am the pariah of my insurer who wants me to die soon, I am sure (or at least their shareholdrs do).

Pat & Nina,

Thanks for welcoming me to your community. Have either of you found a dysautonomia physician who gives credence to the association of spinal stuff with all the other stuff? How's that for a poorly written sentence! Until later . . .

Take Care,

-Mark

[maryfw]

Welcome aboard. The only thing I can offer you is an ear and you will find lots of compassion here. This is a great place, very warm and safe.

mary

[yogini]

Hi Mark,

Welcome - glad you found us. I don't know much about these issues personally, but the literature I've read seems to say that POTS can occur following any major trauma (such as your accident) or surgery. So really either could be the cause of your POTS. Where do you live? There is a physcian list on Dinet which might help you to find a dr. Good luck!

[pearsjon]

welcome mark,

even though i hate to see another added to the list. i am still pretty much a newbie and don't understand alot of this. you sound alot like me, except w/o the injury. my doc said i have one of the highest sympathectic systems he has seen yet. you maybe can translate thta to doc terms. i can't. i just assume that is why i can never sleep or sit still. even when my body makes me i am not happy about it. my mind never shuts down even in sleep. i am up at 4-5am everyday. so tired of that. sweaty palms and armpits, all while i am freezing. i cannot get out of bed w/o the hyper sweats. shower water is always cold to me no matter how hot it is. b12 defficiant which has been showing up for the last 9yrs, noones caught till 2 weeks ago. my adrenaline keeps me going all day most of the time. i crash hard, usually a 15 hr sleep, and it's back to the adrenaline mode. i don't know any technical levels on epi and cates, but i thought that maybe telling you my symps that they could not be related to accident. most people here have had a trauma or something to set this off, for me it is primary. i feel alone in that.

my dx is pots, ncs, oi, b12 defficiant.

if it helps let me know and i can go further into symps. they found a 4mm "cyst" in my kidneys 2 years ago, and nothing furthers has been said about it. nor has it been checked on.just letting you know our adrenaline seems to be running at the same mode.

i hope you find out you don't have adrenal dys. good luck to you.

sandra

[Mrs. Burschman]

Hey Mark,

Welcome aboard! We certainly can all sympathize. We have the Bag-O-Diagnoses too! Along with a whole posse of doctors.

It sure sounds like you're onto something. An endocrinologist I saw thought I might have a pheochromocycoma too, but it was negative. He just scratched his head and sent me along.

You're not the only one to come up with dysautonomia yourself. I stumbled upon information about POTS (including this site) and my psychiatrist (until then, we just thought I was a nutcase) got me in to see the local autonomic specialist. A tilt-table test (my heart went up 34 bpm even WITH medication) proved that I was right. So here I am!

Anyway, this board is an awesome resource, not only for medical information, but also for people who understand what it's like. No matter what weird symptom, you're sure to find someone who can say: "Oh yeah, I've had that!"

We're happy to have you! (Though as always, unhappy you need it!)

Amy

[morgan617]

Welcome Mark! Logic and autonomic dysfunction in the same sentence is an oxymoron, I think. Is that the word??? I had pheo ruled out also and am sure I am hyper. I have IST big time and was talked into ablation in 2003. I now have a pacemaker. He's got a Beemer. I worry and wait for the letter from my insurance that says...hey you are maxed out, when they still can't figure out what's wrong.

You will get lots of support and compassion here, I promise...as far as logic, that's out the window with this stuff!!!! I have a lot of autoimmune stuff too, Periodic Paralysis and every psych disorder you can be named with, by every insecure doc I've met. I love your comment (well yea) about anxiety. It's called stuff pumping through your body that's only supposed to do it when you are supposed to be anxious, not just whenever the heck it feels like it....

Anyway, it's nice to get a guy on board. A real man knows when it's time to turn to a lot of women for support.... morgan

[Maxine]

Welcome to the group Mark.

As you can see by my signature line at the bottom, I have a list of issues-----and, as you can see anxiety is not there. However, all of this has certainly made my anxious---

There should be more research in regards to spine issues in relating to ANS (autonomic nervous system) dysfunction. I have had neurologists deny that the cervical spine and brain stem area would affect my ANS. However, if you look up compression on the brain stem or cervical spine, you can see that the ANS is affected. It's very complicated, as so many things can cause ANS dysfunction from primary dysautonomia, diabetes, thyroid dysfunction & other endocrine problems,, spine or brain stem compression, EDS, and even drug abuse or alcoholism.

I have a confirmed diagnosis of EDS---(ehlers danlos syndrome----hyper mobile type), with vascular involvement. Two different geneticists have diagnosed this in 2006. The Cleveland Clinic also thought I had EDS when I went there in 2005.

I was born with the EDS, and the POTs may be caused by this and the spine/brain stem compression. My spine instability is a result of the EDS also. It looks like there is a combination of problems affecting my ANS.

I was also born with congenital cervical spine stenosis, and the combination of this with the cervical/cranial instability has caused a lot of pain and heartache in my life. Other areas of my spine are deteriorating---most recently a desiccated disk in T-8-9. I never realized how crippling it is to have the middle of your back in so much pain, as it rediates to the chest.

There are also have some weird blood test results, with very high anti-TPO of over 1,600, -0- hydroxyproline, high IGA levels of 478, and epstein barr virus detected in 2000/2001.

I can relate to the confusion you must feel. It's absolutely awful to walk around with such an array of medical problems. So many strange things happen to our bodies, and it's difficult to tell if we should go to an ER, or it's just another odd ball symptom, and the same goes with pain. Is this particular pain something I should worry about, or is this just part of the mess also????

In 1977 I was involved in a car accident. My head hit the windshield of the car--(no seatbelt-- of course I wear one now ). We went to the ER, and an x-ray was taken------then I was blown off for years. I had headaches and neck pain, but it did get better over the 80s and 90s. In late 90s/2000 the pain started to come back. Then I crashed in 2000, and diagnosed with POTS in June 2001. The rest followed. I did have one savey doc spot a compression fracture in the late 80s when I had a neck x-ray done. I don't remember why the x-ray was ordered, as I don't remember any significant issues with pain back then. I have been on beta blockers sine 1990 for tachycardia, but no other significant symptoms until 2000. I was exposed to chemical fumes in the office where I worked in 1990.

I certainly hope you get some answers, and the proper treatment for a better quality of life. I'm fairly burned out on reading the research articles and journals on all of this. Basically, I'm trying to find peace with this, and trying to have the best quality of life possible. Also still looking for better medical treatments for my symptoms.

I feel lucky and blessed to have a good ANS doc in my corner----actually only a mile from my house-- , and a good EDS doc in Cincinnati, along with a great orthopedic surgeon. All are very nice Doctors. I have seen others, and some were good----and others were not. One surgeon in Chicago did surgery on two herniated discs in my neck----and after he removed the discs and replaced them, he also fused and plated my neck. Had he not added the titanium plate, my new doner discs would have probably collapsed due to the EDS.

Best to you---

Maxine :0)

[deucykub]

Hi, Mark. Welcome to the forum.

I'm sorry to hear that you are struggling to receive a diagnosis for your illness(es). You'll find a lot of people on this board with very similar stories in their quest to find out what was causing all of these symptoms. We all feel and understand the pain of being brushed aside, having doctors either tell us (or hide from us) that they think it's all in our head. Frustrating! Dysautonomia is very similar in its symptoms to many other illnesses, including adrenal problems, pulmonary disorders, cardiac disease, gastro-intestinal disorders, and others! Which means that those of us with dysautonomia have pretty much been through the gamut of medical specialists.

There does seem to be a link between physical trauma (vehicular accidents and invasive surgeries certainly fall into that category) and/or viral infections to many cases of dysautonomia. There are also cases with no known cause - I fall into this category (firewoman, don't feel alone!). As you rule out more and more causes of your symptoms, dysautonomia becomes more likely. Because the autonomic nervous system is responsible for the regulation of the entire body, it can affect multiple systems and present with multiple (as well as varying) symptoms. Here is a link to a great reference tool, the Dysautonomia Handbook (the .pdf links are at the bottom of the page).

The most common (if you can call dysautonomia common) dysautonomic diagnoses seem to be Postural Tachycardia Syndrome (POTS) and Neurocardiogenic Syncope/Neurally-Mediated Hypotension (NCS/NMH). You can perform a simple test at home to check for the key symptom of POTS (assuming you have not done this already), the "poor man's" tilt table test. To do this, sit or lie down to allow your heart to reach its resting rate (about 5 minutes should do it). Take your pulse (or if you have a BP Monitor that also measures heartrate, that's even better) in this position. Next, stand up and take your pulse/BP. Staying motionless and remaining standing, do this every minute for the next 10 minutes. If your heartrate accelerates >30 beats per minute or =/> 120 beats per minute within those 10 minutes (it can happen as soon as you stand to as late as 10 minutes into a stand), you are demonstrating the key part of a POTS diagnosis. The other part of the diagnosis is that you experience symptoms when you are standing or are in an upright position.

I was very fortunate to have a doctor (an occupational physician) start to figure all of this out. It started when he took my pulse during the exam while I was sitting, and it was 125. He wanted to capture my heartrate by EKG, so he had me lie down to prepare for the EKG, but because I was lying down, the EKG showed my heartrate at 90. He also saw that my extremeties and lips were turning lovely shades of blue and purple, and after some research, he eventually connected the dots between my multiple symptoms/diagnoses and dysautonomia. Eureka!

I'm not sure what medical options you have in your location; however, your best bet to confirm or rule out a dysautomic diagnosis would be an Autonomic Neurologist. I currently am treated (and was officially diagnosed by) Dr. Roy Freeman at Beth Israel Deaconess/Harvard in Boston, MA. Dr. Freeman and his staff conduct research on dysautonomias, and he is one of the top five experts on these conditions. However, it is an Electro-Physiologist, Dr. Grubb at the Cleveland Clinic in Ohio, who seems to be by consensus the authority on POTS.

I wish you the best of luck in finding a diagnosis. You aren't crazy. This isn't all in your head. Believe in yourself, trust your instincts, drop doctors who don't believe you, and seek out specialists who truly understand dysautonomia to ensure either way that this is or isn't the correct diagnosis.

Take care!

[JenniferInOhio]

Hi and welcome Mark.

I also diagnosed myself and then saw 2 doctors and did 2 tilt table tests to confirm diagnsis. Sad, isn't it? I have a Speech-Language Pathology degree, and I find that I know more than most physicians.

This board is great!

[pastordari]

Welcome!

You are not alone.

Multiple diagnoses here, odd test results, posse of docs until finding this site and the MVP Clinic in Birmingham from this site. It is the closest option to my locale. I don't know where you are located, but this center is WONDERFUL! I see Dr. Moore who has been working with ANS issues for 12 years and she is great. She is the first doc to hear my list/litany of symptoms and not blink an eye. Since having her on board, I am feeling pretty good most days and she is most helpful when something goes awry.

I think I have had ANS issues all my life although just diagnosed 18 months ago. I did not have physical trauma precipitating this illness as many have. I just started having palpatations as if I had run a marathon although standing still. I began the doctor shuffle and many diagnoses and types of physicians later here I am. My pcp diagnosed me partially. Let me explain, she diagnosed me and did some basis treatment interventions. When I wasn't cured she became frustrated and began to term me a problem patient. She told me thrice she just didnot know what to do with me. I found this site and the specialist as I said. The pcp fired me from her caseload due to my self-referral to Birmingham. I have just this week found a doc in a nearby town who actually has heard of POTS and has some knowledge of ANS disorders. I was amazed as I am in the armpit of south Arkansas! Things are looking up!

hope you can obtain some relief and understanding from the medical gurus ASAP!

Welc ome, glad to have you.

[pat57]

ha ha mark,

nobody likes ins companies anyway- so stick it to them.

[pastordari]

I agree insurance companies can be a pain; but, thank God for all the bills they have paid!

I, too, am fearful of meeting my lifetime maximum. Each of my EOB's list the lifetime max and how much I've used toward the limit. It is stressful to think I could use all my benefits and this is my insurance for the rest of my life as a pastor. YIKES!

[doctorguest]

Trauma, injury and spinal surgery may precede the onset of dysautonomia in some people. Have you had a tilt table test done and what did it show? Have you had other autonomic tests to look for signs of autonomic neuropathy? Hyperadrenergic form occurs in about 10-20% of patients with dysautonomia and is sometimes associated with hypertension or hypertensive episodes superimposed on baseline hypotension. Have you tried any medications and were any of these helpful? I know it may seem like small comfort amidst your multiple diagnoses and health struggles, but the good news is that you survived the crash and are not para/quadriplegic. Best of luck to you in finding further answers!

[Maxine]

Deucykub,

Dr. Grubb is located at The University of Toledo Medical Center----which used to be MUO---Medical University of Ohio.

http://utmc.utoledo.edu/physicianapp/physingle.jsp?ID=75

However, there is an ANS expert at Cleveland Clinic---Dr. Fouad---- http://www.clevelandclinic.org/heartcenter...Asp?staffid=637

Maxine :0)

[MomtoGiuliana]

You've gotten lots of good comments and suggestions. I just wanted to say welcome to our group. So sorry for all you have been through, but glad you found us! Hope you can get a better diagnosis and some treatment and see improvements soon.

[Ernie]

Hi,

Welcome aboard,

Dr Grubb is an excellent doctor.

[deucykub]

Whoops - thanks for the correction, Maxine.

[briarrose]

Welcome Mark

I travel over 2,000 miles to see Dr. Grubb in Toledo, Ohio. He's given me back my life!

Steph

[mallen1]

I am humbled by the compassion and information y'all have offered up welcoming me into your community. It helps. Certainly more than most of the specialists I've seen. And here's the tough part to admit: I'm a physician by trade. The M.D. after my name is courtesy of Tufts Med in Boston. To see the amount of grief my profession has inflicted on so many people other than myself is tough to wrap my mind around. By the way, don't be shy about slamming physicians. I do it every day, so blast away.

I've assimilated loads of relevant data over the past week or to and am beginning to sense patterns I didn't see before. Logic may have a place here, but you guys are correct. At this seemingly embryonic phase of understanding, logical theories are few and far between. At least that's been my experience. And believe me, being a doctor doesn't temper my frustration. It may even make it worse for me as I know so much more could be done and in a perfect world. The collective suffering I've intuited from this board could be minimized. But in the real world of thirteen minute office visits - it is very, very difficult.

I'm drifting a bit so I'll close for now. Lot's of folks have asked caring questions about my condition which I'll respond to after a quick rest. This back and forth really helps me to fill in the canvas. Thank you for this place, this community.

Take Care,

-Mark

[Mrs. Burschman]

Hey Mark,

We have other docs here we haven't scared off yet. We like all of you anyway!

Amy

[deucykub]

Hi, Mark:

This table may be of interest to you (source: http://www.mayoclinicproceedings.com/pdf/8203/8203a5.pdf). It shows the percentage of postoperative cases of POTS over 11 years at the Mayo Clinic (granted, you are probably not particularly pleased with the source right now).

[Ernie]

Hi Mark,

I am so sorry you were mistreated by your peers. I had always thought that it was a closed circles and that you protect each other. It does not seem to be the case when you get sick. You are in the protected circle as long as you fit their criteria, ie healthy.

I was badly mistreated by the big names as Vanderbilt and I felt betrayed also.

I have looked somewhere and found other good doctors. It takes a special kind of person to take care of us because we have a disorder that is misunderstood and not well known and not well researched yet. So the doctor has to be open-minded.

Keep your chin up.

Ernie