Seronegative with Positive Loss of Autonomic Breathing
 

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

Hi Curley60

Welcome to NeuroTalk :).

The MG forum is very active so I expect that you will get support and good suggestions from other members.

Best wishes.

Hey, Curley60. You have a lot of things going on with your nervous system. You really do need a larger center that can address all of that. Find a place where there are autonomic experts. Cleveland, Mayo, Duke, Johns Hopkins . . . just do some calling around.Or do you have a primary who would know the best place for you?

Do you have an APAP? That's the latest sleep apparatus. You need one right away. That will help any fear you have about sleeping.

Is your neuro a sleep specialist? Some pulmonologists are, and are sometimes more helpful. Bottom line is that you need an APAP pronto!!!

You need experts. I hope you can find someone to help you, with everything!

Annie