58-year-old retired veteran/federal employee under disability. I am seronegative but have clinical signs of MG. Doctors in hometown tell me, no antibodies, no MG. Sent records to Brigham and Hospital Neurology for the second opinion. Sleep studies showed a Central Sleep Apnea due to loss of signal from the thoracoabdominal autonomic system which makes me wake up not breathing in a panic. Still no action from the neurologist in my hometown.
Should I go to Boston for a workup? I am a real supporter of evidence-based medicine and feel that if I don’t have objective findings I probably don’t have MG, yet I see many patients have MG with no objective findings.
When I explain my symptoms, I would start out by telling whomever would listen that I feel like I only have so much gas in my tank daily, and I must decide whether to use that gas to exercise or do my activities of daily living. After I exercise, I feel worse instead of invigorated, my muscles get pumped, but it is more like inflammation, turns to pain, tightness, weakness, and when I wake the next morning it is like someone gave me a paralytic and beat me with a bat. I feel like I’ve been poisoned. It gets worse over the next few days I can’t exercise due to debilitating fatigue, terrible sleep and fear of sleeping due to waking in a panic not breathing. After 4 days or so, I start to feel better, my blood pressure drops, my heart rate drops. I have to say that the neurologist I did see, diagnosed me with a Central Sleep Apnea.

The rest of my medical history which is listed below are all objectively diagnosed with imaging, lab tests, drug stimulation tests etc.…
• Secondary Hypogonadism, Head Trauma, Labs, stimulation tests, imaging, Leydig cell damage.
• Adult Growth Hormone Deficiency, Damage to pituitary- imaging, stimulation tests etc.
• Small Fiber Poly Neuropathy, Skin Biopsy
• Asthma diagnosis. Spirometry test, mostly exercise induced
• Chronic Post-Concussion Syndrome, (in CTE Longevity Study at BU), Imaging
• Chronic Neurological Deficit Left Median Nerve, EMG
• Central Sleep Apnea, numerous sleep studies
• Anterior Cervical Disk Fusion C5/6 – C6/7
• Herniated C4/5
• Anterior Cervical Debridement from Staph Infection
Psychological Testing due to a hypoxic event during multiple disk surgery.
• Need Right Shoulder Replacement – Osteoarthritis.
• Avulsion Fracture Right Wrist.
• Avulsion Fracture Right Fifth Metatarsal with surgical reconnection of peroneus brevis tendon
• Bilateral Carpal Tunnel Syndrome with surgical Release
• Bi-lateral Plantar Fasciitis with surgical Release
• Left Knee meniscus tears
• Broken Jaw X 2

Thanks