Sunday, March 26, 2017

Dissawhodawhaddya? (An attempt to describe Dysautonomia to the Disability Lawyer)

To the SSI Lawyer: I need to clarify a couple things discussed on Tuesday morning in our meeting. My MRI Report from February 2016 does not indicate ME (Myalgic Encephalomyelitis) per se; instead it states that demyelination may be present. Demyelination is associated with several neurologic disorders including ME. Hopefully a PET scan will shed light on the irregularity described in the MRI Report. I have found where PET scans are done nearby and hope to schedule one soon. These are NOT covered by Medicaid.

Also I want to make it clear that the Orthostatic Intolerance and Neurologic symptoms we discussed are not my only medical problems. Dysautonomia manifests as a series of syndromes, each presenting with a unique set of symptoms. In my case I experience symptoms consistent with the following syndromes: Orthostatic Intolerance, IBS, cystitis, silent migraines, joint hypermobility, arrhythmias (tachycardia, bradytachycardia, Long QT syndrome), visual interference (night blindness, tunnel vision, missing visual field in upper outside corner), epiglottal valve malfunction (choking on food or water), tendinitis (jaws, teeth, face pain), vertigo, ataxia, heat intolerance, exercise intolerance, and TLOC events.

Each syndrome presents with multiple symptoms. For example IBS presents with: abdominal pain and swelling, nausea, diarrhea, weakness, and inflammation, with episodes lasting up to 2 days.

Vertigo presents with: illusion of movement (feeling of spinning, turning sideways, etc), loss of balance, nausea, loss of appetite, confusion, distraction, inability to navigate, and fear/terror.

Silent migraines are triggered by barometric pressure changes and preceded by visual auras (color sparks, lights, fuzziness in center of visual field, tunnel vision, and/or visual hallucinations such as textured shapes). Followed by: dizziness, confusion, severe nausea, vomiting, diarrhea, distress, weakness, extreme sensitivity to noise and light, and long recovery times (1-2 days).

Exercise intolerance presents with symptoms during and after sustained physical exertion: dizziness and confusion, pre syncope, shortness of breath, sustained heart arrhythmias, sharp headache, weakness, inflammation (red swollen painful skin), fever, and long recovery times (1-5 days recovery needed after significant exertion)

Heat intolerance is similar to above but triggered by sustained exposure to heat (i.e., midday heat in May, Hot Bath, Hot shower)

Cystitis presents with groin pain, frequent urination, spastic urethra, difficulty urinating (i.e. dripping, doesn’t want to release).

Hyper mobility presents with joint hyperextension, joint weakness, frequent sprains, pain in joints, stiffness, joint inflammation, spinal disc compression (multiple discs), sciatic pain.

I am never symptom free. At any given time I am experiencing four or more syndromes – with anywhere from 30-120 distinct symptoms at once. During flare-ups (during cold or hot weather) many syndromes are triggered at once.

A typical winter flare-up includes: neck pain and stiffness, blister outbreak (in ears or groin area), allover skin inflammation, IBS, cystitis, flu-like symptoms (giddiness, weakness, dizziness, fever – the feeling like you are coming down with something), low-grade headaches (possibly caused by CFS dysregulation–too high or low intracranial pressure), and intermittent silent migraines with aura.

A typical hot weather flare-up includes: heatrash, skin inflammation, itching and burning allover skin, arrhythmias, shortness of breath, dizziness, confusion, weakness, tremors, involuntary movements such as chorea, jerking leg (right side), low grade headaches.

These are lifelong but intermittent syndromes. They are generally worsening over time. The neurologic symptoms I described to you began in earnest about 7 years ago. A typical neurologic episode involves: cramping, involuntary movements, Hemiparesis (right side), muscles "locking up" (stiffening, hard), feeling of "shocks" going through body and brain, profuse sweating, confusion, shortness of breath, difficulty breathing, difficulty speaking, and occasionally delusions, Tremors, intermittent weakness in legs and back, pain/numbness in extremities, sciatic pain, and nystagmus have been present since childhood. I believe I also experienced frequent TLOC events throughout childhood while traveling by car. I have begun having TLOC events again as an adult (since about 2013). I am afraid to get on the bus because one day I blacked out repeatedly – about 8 times in one mile – during bouncy ride near back of bus. I suspect these events may be associated with ME.

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