Are these symptoms indicative of a particular disease/neuro issue?

[jmr106]

39M 5'8 160 pounds. Muscular, fit. Active for all of my life. Symptoms increased in 2019. Possible light symptoms since childhood. In the past couple of years, I have been diagnosed with Postural Orthostatic Tachycardia Syndrome/Autonomic Dysfunction of some sort. Basically fluctuating heart rate and blood pressure with wild swings, mostly high and normal, but sometimes a little bit low. I've been shaky and had light tremors since I was a kid. Got colder and more nervous than the average person in typical scenarios. Got a bit of shivers here and there. Hard to tell if it was anxiety. One of my biggest fears in school as a kid from the first grade until graduating from high school was public speaking.

Things exacerbated in December 2019. I went to the ER with palpitations, trembling all over as if freezing cold and feeling adrenaline at the same time, very frequent urination, 170/113 blood pressure that was bouncing up and down, jitteriness/anxiousness, trouble speaking during that jitteriness, skin color changes (I've had these for all of my life), trouble walking (my legs felt jittery and like they were intermittently not functioning properly). I've been that way since with ongoing symptoms. Sitting down can make my legs feel numb sometimes. Standing up in place makes me lightheaded, ears can ring, etc. Leaning forward over a sink while standing or leaning forward while sitting at my desk can make my ears ring and make me lightheaded to near-syncope. I also developed exercise intolerance. I used to be able to mow both lawns back to back. Now I struggle to mow a few rows without heart rate jumping to 160. I can do cardio on the recumbent bike for 30 minutes straight, but heart rate will hit 150-160 and stay there and I will feel severely lightheaded and legs will get extremely tired and somewhat painful in the upper thigh areas.

I've been through a few ER visits, have seen 4 cardiologists, an endocrine/thyroid doc, two sleep doctors, a few sleep studies, a gastroenterologist, a couple of neurologists, a couple of primary care doctors and a functional neurologist.

As best as they can tell when all diagnosis are pooled together over the past two years, I have:
1. Postural Orthostatic Tachycardia Syndrome (POTS)
2. Dysautonomia with autonomic dysfunction exhibited by significant fluctuation of heart rate and blood pressure with a sympathetic response that is excessive, as seen on tilt table test. Post-prandial hypotension and a constellation of other symptoms like fatigue, shortness of breath, palpitations, chest pain, rapid heartbeat, nausea/gastrointestinal pain, headache, dizziness, tingling, urinary frequency, anxiety, sleeping problems. Sometimes my stomach, small intestines (mid-abdomen), colon (lower abdomen) and bladder all feel like they 'ache' at the same time and then it just goes away eventually. Sometimes my belly looks a little distended during the day vs first thing in the morning. Bowel movements can be 2-4 days apart and have been for most of my life.
3. Generalized Anxiety Disorder caused by the autonomic issues.
4 Complex Sleep Apnea. Being treated on bi-level because they saw a lot of central apneas in one of my in-lab sleep studies. A sleep study 2 years before showed no central sleep apnea or obstructive sleep apnea. I sleep terribly every night and feel like I'm never rested even with good numbers. They think it is the dysautonomia.

The functional neurologist, though reviled by most MD/specialist docs, immediately recognized my autonomic symptoms by my skin turning colors, body malfunctions, neurological 'jumps' and such. My VNG also showed abnormal symptoms like square wave jerks, fluttering around the skin of the eyes constantly, hippus and increasingly poor focus as my eyes moved faster to focus on faster moving targets.

Of course, I am going to continue seeking more medical care. I don't expect a full internet diagnosis. I am pending Social Security Disability approval and will get some more health insurance and continue searching and testing. But today I got my neuro exam results from November 2021 at a local functional neurologist who founded a chiropractic neurology center that also treats POTS/dysautonomia not using meds (the retrain the brain via plasticity exercises of a large variety to try to help symptoms go away). Primary care said to see the neurologist since more of my symptoms fall into his area. My neurologist was puzzled by my VNG findings and the functional neurologists' exam notes above. He said he had no comment on the findings and wanted me to go to a "dysautonomia specialist" (they don't exist and are usually neurologists who are very rare with only one or two in each state) for my symptoms.

At the functional neurologist, they measured the blood pressure, pulse and O2 in each arm while seated, supine and standing. As you can see, there's some variation. This is usually to test for POTS, which I have been determined to have. I've got some mighty weird stuff going on. Does any of the below indicate any particular type of disease or condition based on these exam findings? I see their diagnosis, but ataxia is a pretty broad term and I can only assume that it was just found as a symptom just like the other things.

"Blood pressure:

seated right arm 128/72, left arm 130/70
86-104 pulse variation during the bp measurements. 98% O2 levels.

supine right arm 138/80, left arm 136/80
92bpm pulse, 96% O2 level.

standing right arm 132/88, left arm 128/90
Pulse variation of 92-114 during the bp measurements, 99% O2 level.

Upper and lower extremity reflexes are brisk, +3 bilaterally and create mild tremor. +4 patellar.

Negative Moro while seated, positive while standing. Bilateral ankle clonus, three beats.
Negative Babinski.

Pallesthesia increased on the left lower extremity, equal in the upper extremity.
Weber negative.

Pinwheel increased on the left upper extremity. Lower extremity intermittent findings. More on V2 and V3 on the face - reports feeling the pinwheel in his right ear canal. Crepitus in the jaw, decreased ability to open the jaw.

Geographic tongue - white.
Redness in his oral mucosa.

Muscle strength +5 in the upper extremity and lower extremity.
Bilateral twitch response to taps to the upper trapezius.
Reports low back pain from poor lifting mechanics at work.
Pincher - right ataxic, thumb circumduction during movement.

Finger - nose test - intention tremor bilaterally, creates a tremor in his torso and head following contact with his nose. Worse standing, tremor elicited when re-extending the arms as well as before his nose. Hands are in a claw while standing and supinate when he returns them to extension.

Left RAM.

Staccato breathing during heart and lung auscultation, worse following talking.

Tight hamstrings.

Gastric auscultation. WNL

Wide based gait, lateral sway left, arms abducted.
Dual tasking improves the gait.

Assessment: Improves with dual tasking, use saccades.

Diagnosis:

Ataxia, unspecified.

Segmental and somatic dysfunction of cervical region.

Tachycardia, unspecified.

2 hour exam. Patient received care without incident."