44-y.o. woman just given tentative dx at Mayo (waiting to hear) of autoimmune autonomic neuropathy with possible CIDP. Went for MS eval and instead got worked up for auton. dysfunction. 1st symptom I had was in '90-Horner's syndrome with left-sided anhidrosis, ptosis, constricted pupil. Felt fine then. Went to neuro who only did CXR/told me it was probably benign-took his word for it. Anhid./ptosis lasted 2 years, small pupil only few months. In '94 actually GOT sick; about month after RTI got onset of constant right-sided chest pain that spread to left/low-grade daily fever lasted 6 months, faintness, bradycardia, chest became weak/breathing slowed down-felt very ill. I felt like I had to make my chest go up/down myself/mechanical thing. Chest sympt. lasted approx 1 1/2 years before tapering off to partial remission. In '98 right side of mouth started drooping/right eye became blurred. '99 got bad bact./intest. infection and IMMEDIATELY symptoms (except Horner's) returned full-force--more chest discomfort/tenderness than actual pain this time, faintness, slowed breathing. 2 1/2 months later left arm/leg became mildly weak/dragged, trouble swallowing (left-sided thumping in throat), slurred speech. Extreme exacerba. every month with ovulation, once with sudden partial paralysis, slowed/shallow breathing, slurred speech. 5 years ago decreased sensation sexually/urge to pee/occas. incontinence (no retention). August just dxd with severe gastroparesis-doctors FINALLY believe I am actually ill. What is prognosis for untreated AAN? Angry and scared. Thank you.
First of all, keep in mind that I am unable to diagnose you because I am unable to examine you, this forum is for educational purposes.
Many of the symptoms that you describe are consistent with autonomic dysfunction including gastroparesis, Horners syndrome, bradycardia, faintness, bowel/bladder problems and swallowing difficulties. Your problems with left sided weakness and chest pain is a little harder to fit with AAN. Autoimmune autonomic neuropathy occurs when your bodies immune system makes antibodies that attack your autonomic nervous system. This can be in several different isease types/forms. One instance this occurs in is Guillain-Barre syndrome (GBS) which also cuases an accending paralysis of the body (feet affected first, then arms and finally respiratory muscles). The course for GBS is generally short (an acute disease) with onset/progression of symptoms over 3 days-1 week. In addition to the ascending paralysis it also attacks the autonomic system causing many of the ailments that you have. However, since your course has been more chronic it is less likely to be GBS. Another possibility is chronic inflammatory demyelinating polyradiculoneuropathy (CIDP), which can also have associated autonomic dysfunction (although less often than with GBS). CIDP can cause a chronic relapsing and progressive loss of motor functions, patchy sensory loss and most of all- chronic pain. CIDP can be treated with steroids, IVIG and plasma exchange, depending on the severity. Another possibility that must be consisdered is the possible presence of a paraneoplastic antibody (which can also give you a CIDP-autonomic dysfunction type picture). Paraneoplastic antibodies are your bodies immune response against a cancer (most common is lung, but can be any type of cancer). The antibodies inaddition to fighting the cancer, also attack your nervous system and cause problems such as AAN. The course for patients with paraneoplastic syndromes is often short (acute) and devestating. Thus, given your chronic history, I think this is less likely (but I would recommend a CT scan with contrast of the chest/abdomen and pelvis, a mamogram and a colonoscopy to screen for cancers).
I hope this has been helpful
Does the mild urge incontinence make AAN less likely? I definitely do not have urinary retention (they tested me for that at Mayo and tech said there didn't appear to be any retention, which I already prety much knew). Also, I have mild tingling/heaviness (like blood is being cut off) in left leg/arm intermittently. Also, hair started falling out after I had three infections in 2 1/2 months' time (UTI, RTI, something with my stomach with high fever about 4 years ago. It is diffuse thinning out of hair (no big patches)--eyebrows, eyelashes, arms, etc; don't know where this fits in. Thryoid work-up negative 3 years ago. Thank you once again for your time.
left arm/leg became mildly weak/dragged, trouble swallowing (left-sided thumping in throat), slurred speech
Extreme exacerba. every month with ovulation
decreased sensation sexually/urge to pee/occas. incontinence
"Bell's palsy of the gut"- article by Dr. Virginia Sherr
mild tingling/heaviness (like blood is being cut off) in left leg/arm intermittently
hair started falling out after I had three infections in 2 1/2 months' time- UTI, RTI, something with my stomach with high fever diffuse thinning out of hair (no big patches)--eyebrows, eyelashes, arms, etc;
I will read more on Lyme--I am open-minded, willing to learn and to consider anything. I know it can cause most (if not all) the symptoms I have, but I really doubt it is the cause, especially because of the way my symptoms present(ed) (and relationship to infection and hormones. Also, when I first got sick I lived in south Florida. I know Lyme has been identified in 49 or 50 states now, but there weren't a whole lot of deer in the vicinity where I was in 1990 (and probably even fewer now). My symptoms are mostly autonomic with only mild sensory/motor, and that is one-sided as far as leg/arm. Don't even know if Lyme can cause asymmetric weakness, and I have never read anything on Lyme presenting with full-blown Horner's, and I have read extensively on it because that is the one thing I knew for sure that I had (with a name attached to it) until I recently got dxd with the gastroparesis. But I know there are people out there who have Lyme and are suffering and don't have a diagnosis yet, so thank you for the response.
I doubt you read this far down, but I will try anyway. Thank much you in advance.
Just got results from Mayo-brain MRI w/contrast negative. Autonomic dysf. work-up (Tilt table, test for urinary retention, SNIF test) all normal. Sudomotor/Q-SART tesing ABNORMAL (left leg showed hypohydrosis)-residual from '90-'92 left-sided Horner's??. ALL OF THE BLOOD WORK NEGATIVE (GAD65 Ab, tissue transglut. IgA Ab, ENA Ab, AChR ganglionic neuronal Ab, AChR muscling bind Ab, N-Type calcium channel Ab S, P/Q-type calcium channel Ab, striated muscle Abs, ANNA-1, 2, 3, Purkinje cell Ab types 1, 2 and Tr, amphiphysin Ab, CRMP-5-IgG, cyclic citrulinated Pep Abs, thyroperoxidase Ab, HTLV I/II, hexosaminidase A). Neuro said she thinks my autonom. neuropathy still probably has an autommine basis, but suggested LP to definitively rule in/out MS and consult with auton. dysf. specialist at Mayo to find out what more can be done/treatment since cause not identified.
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