Undiagnosed Symptoms Community
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Avatar universal

Where else to look? Dysautonomia too many symptoms and no definitive test results.

Running out of places to look, doctors to see, and patience.  Hard to say when symptoms all started, some have gone on too long or started too gradually to notice until bam, they'really there.  Others have gone one about 3 years, or started and increased just the last 6 months.  7 months ago I finally started seeing a Dr after only having Healthcare while pregnant (2x) in the last 20 years.  It took that long to have health coverage AND be in a situation where it was doable for various reasons.  
     Anyway the issues I'm having run 99% of every possible listed symptom of autonomic dysfunction of some sort.  The first big one that alarmed me was presyncope/grayouts while gardening 3 years ago and ever since.  The world "fades to black" like in a movie, after standing from a squatting/hunched/kneeling etc position.  The first 2-3 times I do it this doesn't happen but once it does it does every time and gets worse with each.  Late this spring while planting my garden after only 3 instances I had a whole rush of weakness fatigue etc and headache that took 2 hours in a chair to go away.  This is when I called the Dr to draw more attention to my issues.  I'd started seeing him in march with a list of various symptoms I'd had for varying lengths of time and being my first visit only a couple were pursued, namely my respiratory issues, chronic constipation and chest pain.  All 3 had gone on for many years, the chest pain as far back as age 14.  
     I am now 37, female, 2 kids youngest 12, no history of hospitalization before this summer, possible concussion 13-14 yrs ago as a wrestler, and until 4 yrs ago all career pursuits were highly active: firefighting, professional dance, pro-wrestling, bouncing/security, and amateur bodybuilding.  Towards the end of my work in these areas I started having sporadic bouts of lower leg edema, and during physical exertion would almost instantly get so thirsty it felt like I was choking.  
    Fast-forward to this summer when symptoms compounded.  I found standing for 15-20 min talking to neighbor I'd feel as is my blood sugar was dropping severely (history of hypoglycemic episodes mostly after exertion from age 25 to 32, with glucose as low as 20 or below with inability to wake up if sleeping without an IV from ambo, the last time did land me in the ER as the medics were unable to revive so I could refuse transport)  This apparent reactive hypoglycemia has never been diagnosed as I never had insurance, and it has subsided in recent years either due to lessened activity and/or strict attention to diet (I avoid simple sugars and white carbs like the plague unless combined with sufficient other macro nutrients to minimize their glycerin index and thus raise blood sugar slow enough not to trigger a response as in the past)  Point being, I know very well what plummeting sugar does to my body and how it does and doesn't feel, and standing outside with a neighbor for too long elicits the s as me response with 1 exception: nausea.  Hypo episodes have never come with nausea for me and these issues just standing still include such extreme nausea I'm unsure if I can get inside the house much less the bathroom without vomiting due to both its severity and urgency, and my own accompanying weakness uncoordination, brain fog, etc.  I do not however ever vomit.  Once sitting or lying down symptoms start to subside but not immediately.  In these cases heat seemed to be a factor, it adds intensity to all of my issues and my tolerance is very low these days.  But, this can happen when it's only 60 degrees as well as 90, and unless I'm being active, or trying to be, 60 degrees is freezing to me.
     Thus come more symptoms.  Heat intolerance.  Other than respiratory issues I have several times a year (also unevaluated by a Dr as timing hasn't meshed since I got insurance)  heat has never caused me issues so readily as now.  As if my exercise tolerance was bad enough these days and getting worse not better, any presence of heat exacerbates it ....and another symptom while writing, loss of words.  Exponentially was the word I wanted but could not find.  Inability to find words,  short term memory failings, brain fog, and mishearing things in conversation constantly, but after a second or 2 usually my brain catches up to my ears and finds the error.  Ears fine, brain isnt.  
    Due to length second post incoming with all signs symptoms tests etc. Thanks for reading
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Avatar universal
  Forgive my scattered narrative, focus is at a loss these days as well.  Perhaps I should just try to list off all symptoms and signs I can without regard to severity duration or onset, just to get it all out there:  insomnia, myoclonic jerks, severe constipation with perfect diet, incontinence, urinary frequency, incomplete emptying of bladder,  short term memory issues, loss of words and names, mishearing words, emotional lability, short fuse, nightblindness, heat intolerance, cold intolerance, exercise intolerance, numbness tingling extremities with and without obvious circulatory chokepoints, numbness/tingling in neck and back of head, various joint pain and weakness, stiff neck, migraines, sore back-upper and lower alternating, dry eyes, dry mouth, tachycardia vertical and exertional, bradycardia supine, "possible left atrial enlargement" on multiple ekgs, other ekg abnormalities including long QRS and abnormal P and ST, nonrespiratory sinus arrythmias, inner tremble, stabbing chest pain isolated to left side adjoining sternum upper breast area, dull chest pain/weight bilateral upper chest, neuropathy in feet (Dx by neurologist during exam), absent foot seat, extra pelvic face and chest sweat, minimal armpit sweat if at all, motionsickness brought on only while looking at stationary objects, cold hands feet and but almost constantly, "lung butter" if wake up too early or any time cool and damp, low-normal sodium, low anion gap, low-normal AST and ALT,  negative Lyme but positive p41, negative ANA sjogrens hiv syphilis, negative occupational heavy metals screening, negative CRP, normal CPK, sedan rate 10, low range cortisol, negative all diabetes/prediabetes tests (no GTT performed), high-normal or barely high hemoglobin hematocrit RDW MCV MCH MCHC, HDL 43 LDL reflex 131, 24hr Holter monitor 19 ectopics total min HR 45 max HR 170 low exertional gardening as biggest activity, TTECHO said normal but mentioned some regurgitation in tricuspid and mitral valves- much of the study says not well visualized EF 57%,  carotid doppler 1-39% stenosis but no more specific and called "normal"-leg doppler showed no stenosis at all, MRI &CT scans said normal but I don't buy it and positioning of MRI was horrible so midline looks way off- have full scans of all to check or 2nd opinion due to familial abnormalities of vessels in brain killing previous 2 paternal generations along with 25 yr migraine history,  tilt test tester day said "essentially normal" but watching the numbers it certainly was not- 55 acg HR supine vertically 95-110 for first 10 min leveling out 85-100 following 10 test ended after 20 no symptoms- systolic BP only raised slightly from supine(95-105 to 100-117) i.e. normal but diastolic BP raised significantly from 60-65 to 85-90 vertical was told dehydrated bc low BP but low sodium says hypovolemic not dehydration and pulse pressures were only 20-27 while vertical 40 avg supine,  all other tests were either normal or not performed yet.  Not yet performed: celiac antibodies, paraneoplastic antibodies, chest gastrointestinal or pelvic x-rays etc, other tick borne diseases or repeat lyme, most specific blood tests for autoimmune or mitochondrial, no nutritional panel, no CSF testing, nerve conduction, biopsy other than cervical.  
     Other relevant info: 23 pack year smoker with bronchial asthma, nondrinker, high fluid consumption, caffeine 3-400 MG/day down from 12-1600/ day 5yrs ago, avid outdoors person active in hunting trapping gardening shooting etc, live near 6mill acre national forest (across road) with other woods bordering property in high lyme risk area, 4 dogs 4 cats full ticks found on animals in past 1 dog had lyme last year but treated, symptoms greatly worsened this summer but many present for 5 up to 30 years,  diet high fiber low sugar low saturated fat large vegetable variety high protein increased salt on Dr advice but was never low in diet no empty calories all whole grains home made nonpackaged meals, familial history of cancer and diabetes plus the aforementioned vascular issues.  Currently have unattended dental issues and HPV16 with cin2+ (not first time)

  Think thats everything but my memory ***** so I write everything down, if I can find it.  We've tested many things and many not yet.  Does anyone have any insight where to look?  Greatly impeding on even the most simple parts of life much less trying to work but as I don't work seems I'm getting blown off and patronized rather than diagnosed so I can return to a productive life, or figure out how to mm I've on without productivity.  Can't stand sit exert for any period of time nor retain any sort of schedule with sleep or even showers due to the water and standing/activity required for that.  Just need some ideas to help aim drs.  Plan on celiac test but they had to look up yet test (???)first which I found 2 min on Google heh, am going to ask for chest gastrointestinal and pelvic x-rays and paraneoplastic antibodies as well due to risk factors and symptoms.  Some longterm symptoms may be unrelated or comorbidities so any questions about onset sequence etc I can answer but this has been long enough for 1 post.  Thank you any still reading.
Forgot to mention father had Dx ALS but neurologist and myself think wrong. Never wheelchair bound. Initial symptom was syncope upon standing 13 yrs be for death. Dx was made early 1990s no medical documents found in home to support or refute ALS only lack of expected disease progression.  He had stroke 3-4 yrs before death made recovery to a walker and unassisted living alone.  Death was massive brain hemorrhage after standing following lying down with massive migraine 24hrs.  Age at death 66. His father died similarly in age and circumstance both with unknown type of cerebrovascular defect.  Wondering if genetic what I have and if knowing their history would help.
How likely/possible is this to be mitochondrial and how would I find out? Specialized tests and specialists in specific disease don't exist anywhere nearby and having medicaid and no income means no travelling far or consulting most specialists.  Medicaid been great for covering things in the health network I use but autonomic specialists and such I've tried to contact even remotely (6hrs) in my area don't take insurance at all and increasingly more just don't take medicaid anymore if ever.  
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