Multiple System Atrophy Coalition | Building Hope For ...



To my MD:I have a Multiple System Atrophy (MSA), formerly named Shy-Drager syndrome. The MSA Diagnosis Code is: 2018 ICD-10-CM Diagnosis Code G90.3This is an extremely rare, progressive neurodegenerative disease characterized by the death of cells in our brain-stem, cerebellum and spinal chord. Most doctors end their professional lives without seeing one single case. The cause is not known, but it is not hereditary, nor contagious.A mixture of Parkinsonian symptoms along with cerebellar ones (ataxia, loss of balance) and a compromise of our autonomous nervous system cause the progressive loss of all vital functions. These include sweat, digestion, the ability to maintain our blood pressure or our pulse in different positions, and breathing. The cerebral cortex, where our feelings, sentiments, memory and thoughts are, remains well preserved to the very end. We usually run on a lower temperature of 34.5-35.5? Celsius, so, a “normal” temperature of 36-37? can actually mean a low-grade fever for us. Our standing or sitting (upright) blood pressure can be very low (orthostatism), and is not representative of our actual blood pressure, which should be measured both in standing and laying positions.Constipation along with the loss of the control of our bowels is a very common symptom, and from early in the disease we suffer from loss of bladder control -- both as retention or overactive bladder.In an attempt to maintain responses to the weakening impulses of our autonomous nervous system, our body develops a very high sensitivity to all autonomic stimuli, a type of “thirst” that makes us very sensitive to many circumstances that can be lethal to us. For example, the weak substances present in tiny amounts in an over-the-counter nasal decongestants, can elicit in us a life-threatening hypertensive event or tachycardia.So beware of, or be very prudent with:General anaesthetics, I can undergo major surgery with almost no problems as long as I am hydrated BEFORE and during surgery via an IV. This avoids the problem of dehydration due to the fast and liquid free period of 12 hours (to empty stomach) by hydration without going through the stomach. Review my other medication and take in account my excessive or unusual response to drugs.Local anaesthetics tainted with vasoconstrictors (adrenaline and derivatives).Proper adjustment of ventilators.Mechanical stimuli of viscera (esofagoscopy, bronchoscopy, gastroscopy, rectoscopy, colonoscopy, cistograph, cistomanometry).Secretions aspiration.Vascular stimuli: dialysis, plasmapheresis, angiograms, catheterisms, haematic/plasmatic rechange.Avoid the following:hypotensive factors such as vomiting, diarrhea, alcohol, drugs.medicines: ganglionar blockers, alpha-blockers, hypotensive drugs,diuretics, phenotiazines, tricyclic antidepressants, butirophenones,barbiturates, benzodiazepines, l- DOPA, bromocriptine, antihistamines,sudden emotional stimuli.sudden gastric fillment, large meals, very cold drinks, excessive fill of the bladder or sudden void.Valsalva maneuvers.rise of the intrathoracic pressure.sudden orthostatic maneuvers.physical exercise (especially isometric).hot ambience, both humid and dry (we may not sweat).sudden immersion in cold water.standing for a long time.In severe cases, an accelerated heart pacemaker may be implanted.Gastrointestinal dysfunction: fibre-rich diet. Pharmacological adjuvants may be added, and intestinal motility regulators (Mebeverine). Avoid large volume enemas because of their distensive effect.Sphincter dysfunction: rehabilitation measures and learning of periodic voiding techniques. A prosthesis of the sphincter may be used. Arrhythmias, aspirations and apneas should be prevented and detected early.Whenever hospitalized, I must be assessed by a neurologist.Thank you, ................
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