Would you guys please give me some advice.

[crowmedicus]

For 13 years I have been dealing with a mystery illness and I've been checked for nearly everything imaginable, but still no answer's. I was hoping you guys could give me some advice if I told you my symptoms, my PCP suggested dysautonomia; but I seem to have the reverse of what most people experience so he said it must be something else.

my symptoms are -
Dry eyes, mouth, skin.
Thinning of skin.
Hypertension
Heart palpitations - tachycardia/PVC's
Constant lightheaded feeling
Feeling of swelling in sinuses, congestion.
Dry cough, occasional difficulty swallowing due to dryness in throat.
Constant nausea, abdominal bloating, and air swallowing.
long periods of diarrhea or constipation, never normal bowel function.
An inability to sweat normally, instead of sweating I'll become very red and I'll experience an intense itching/burning sensation at every pore site on my head, neck and chest.
Erectile dysfunction, ejaculatory dysfunction, and extreme difficulty achieving orgasm.
I also have multiple sensory neuralgia's, trigeminal, pudendal, occipital among others. All began 2 years after the other symptoms.
Lastly I experience these episodes I call attack's where I get very anxious, the veins in my arms and legs dilate; my arms and chest become red, it gets hard to breath, my blood pressure shoots up to around 190/140 some times higher, I'll get very nauseous, my heart rate will jump to around 140+bmp, my eyes and mouth get very dry and I'll get a fever of around 100-101. These attacks last for around 45min-3hours and really the only I can do to stop it; is to lie face down on my bed and put a bunch of ice packs on my back.

I have had cranial MRI/MRA, multiple tests for pheochromocytoma, thyroid, 30 day holter monitor, echocardiogram, and lots of other stuff. but no answers. So I'm asking you guys, could you please tell me if there is a form of dysautonomia that could cause my symptoms, something I can tell my doctor about. Thank you very much for your time.

[Heiferly]

"autonomic neuropathy normally is caused by decreased production of one or more catecholamines"

I think you need a second opinion from a doctor who is knowledgable in autonomic neurology. It does not seem as though your current doctor is up-to-speed in this subspecialty, unfortunately. Do you need help locating the closest University Teaching hospital or Autonomic Clinic to you?

[Nanna48]

Another thought - the HPA axis. Yes, mine is slightly off - with high cortisol at times, and low epinephrine at other times. The sacro-occipital chiropractors and cranial osteopaths explain that the sphenoid bone in the cranium reciprocates ( in movement ) with the tailbone, or coccyx. So, distortions of the coccyx cause distortions of the sphenoid. The pituitary is housed in a little notch in the sphenoid bone, so it can become stressed when the sacrum and coccyx are misaligned. Yes, my coccyx is twisted to the left, and my sphenoid tends to rotate. I feel the sphenoid problem as pressure behind eyes and in head.

[Nanna48]

I have had most of your symptoms as well - took 16 years to get a diagnosis of dysautonomia! Pleas check my new discussion question about the sacrum/pelvis - possibly an important part of the mysterious cause of nervous system chaos. But there may be more. I wonder how many of us have scoliosis? I think there is some relationship between unstable pelvis, unstable atlas, scoliosis, and torque in the entire dural tube from the sacrum to the brain. Specific adjustment of the atlas by NUCCA chiropractors help some. Pelvic floor physical therapists can also help. It seems important ( in a certain group of us) to get tension off the dura by very gentle procedures. I have also been diagnosed with a small posterior fossa, similar to Chiari, but no herniation of cerebellar tonsils. Would love to hear comments on body structure as a predisposing factor to dysautonomia.  

[crowmedicus]

Thank you for your response Heiferly.

I have not had a tilt table test, I'll see if I can get that arranged.

The reason my doctor seems to think it must be something else is my catecholamines are always highly elevated, around 3x the normal maximum range. It's very abnormal but still not quite the 5x+ normally seen in phoe/para patients, Even so I had an abdominal MRI that came back clear. My doctor said that as far as he knows autonomic neuropathy normally is caused by decreased production of one or more catecholamines, so it just didn't make sense for my case. He's a small town doctor so he might not be up to date on what's the current understanding of the disease.

[Heiferly]

Every symptom you describe fits with a diagnosis of dysautonomia, hypothetically speaking, so I'm unclear on what your doctor meant when they said you have the opposite of what is typical in autonomic disorders. I would advise asking your PCP for a referral to either a neuro-muscular specialist or an EP cardiologist (i.e. electrophysiologist). These are the two specialties that work closest with autonomic disorders; there are a number of tests that can be performed that will help ascertain whether it is indeed dysautonomia, and if so what type it is.

You do mention multiple tests have been performed. Did they ever do a HUTT (aka TTT or Tilt Table Test)? This is the primary test for autonomic disorders, and can help put holter monitor results into the right context.

Let me know what further questions I can help you with. I am so sorry that you've been suffering for over a decade with no diagnosis; I hope that you can get a referral to a knowledgable specialist (ask before you schedule with them if the doctor has expertise in this field) who can hammer out a diagnosis and treatment plan for you.