I am 53 and have a mild neuromuscular disorder but with debilitating fatigue and am having trouble understanding the diagnosis; the terminology used; and whether I should seek further clarification of my issues. In 2007 I was diagnosed with Chronic Denervation or ‘Neurogenic Disorder’ (probable post-infectious – similar to a polio infection but not polio – I was told).
My questions are:
What is my ‘muscle fatigue’ called: is it weakness, fatigue, or exercise intolerance and is this typical of “chronic neurogenic change”?
Given that my mental fatigue has not abated in 5 years; my ‘exercise intolerance’ and muscle pain/fatigue (particularly in my arms) is marginally worse; and my relevant family history should I pursue further testing for other causes such as metabolic disorders, central core disease, etc which may be a common condition if very mild in myself?
My Exercise intolerance, fatigue or weakness? Especially brief & intense i.e. repetitive hand grips, signing name, cleaning teeth, beating eggs (by hand), rapid foot or leg movements, chewing on large or tough objects; muscle becomes stiff, fatigued and painful and lacks ‘strength’ with-in 10 – 30 seconds: Moderate exercise usually well tolerated although with some lasting fatigue and discomfort. No obvious eye or eye-lid involvement. No ischemic exercise tests carried out ‘Static exercise’ i.e. maintaining erect posture, standing still in one spot, holding arm up to hang out clothes, etc. No evidence of myoglobinuria Chronic fatigue for +10 years – progressed from mild to current debilitating form. Have had 2 major health crisis or setbacks.1/ age 7 yrs hospitalised with ‘fever of unknown origin including encephalitis and 12 months muscle pain, ‘arthritis’ etc. transferred to Children’s Hospital – suspected brucellosis – also considered rheumatic fever and parathyroid? 2/ In 2006 onset of greater fatigue and cognitive issues, muscle aches, nerve pain, fasciculations, muscle stiffness, enlarged liver, etc.; Meds: Effexor 250mg day, Stelazine & then Epilim (sodium valproate) by family Dr for ‘mood stabilizer?’; various antibiotics for suspected Q Fever (didn’t have it) and then confirmed salmonella; Mildly elevated CK at rest, up from 119 to 232 U/L Other diagnosis: Moderate sensorineural hearing loss (2007), GORD, ADD (1997), Major Depression, etc. In 2007 I was diagnosed with Chronic Denervation or ‘Neurogenic Disorder’ after SFEMG & muscle biopsy (for mitochondrial cytopathy – not screened for metabolic disorders – mito screen negative for KSS/CPEO). Tested for Ddx: ALS, MS, MG, heart disease, etc.
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