My husband has been suffering for over a year now with an as-yet undiagnosed illness that include symptoms of peripheral neuropathy. There is so much first-hand experience on this site, I hope maybe some suggestions could come my way.
Here's a summary of symptoms and events that may or may not connect, but worth mentioning.
- Elbow tendonitis for 8 months - not unusual due to occupation
- Sinus and ear infection that lasted over 4 months, 4-5 different antibiotics tried
- Not long after sinus infection seemed to resolve, developed tingling sensations down outside of both forearms
- Within 2-3 days, tingling sensations down both lower legs into feet
- Pain - pins and needles in muscles, severe joint pains - lasting several minutes to half an hour
- Progressive muscle weakness, starting with hands / forearms, progressed to legs
- Loss of reflexes - tapping with hammer shows no response
- Neuro symptoms - transient - difficulty speaking, difficulty forming words, stuttering (no history previously), mental fogginess, memory difficulties
- Transient bradycardia - heart rate 50-55 bpm
History of: diverticulitis, asthma, allergies
Only unusual family history: Father has Myasthenia Gravis
Radiology: MRI of brain & spinal cord, CT of abdomen both normal
EMG and NCV: Normal
Lab tests: Only blood work abnormal is Sed Rate (>100 mm/hr) and C Reactive Protein (>12).
Muscle biopsy: Totally normal
His 'diagnosis' right now is fibromyalgia, but we and the doctor both know that's not all this is. He is on a pharmacy of meds: Lyrica, Cymbalta, Seroquel, Tramadol, Hydrocodone as needed, and prednisone.
The meds help, but don't eliminate, his pain. Prednisone is the ONLY thing that improves the muscle weakness. However, having already been on it for 6 months and seeing another rheumatologist, he is being weaned off of it for further testing. The more the dose is decreased, the more weakness returns. He's also having headaches every day, which are progressing to starting earlier and earlier each day.
The new rheumo mentioned Gullian-Barre or another viral syndrome, but he's had no paralysis.
Any thoughts would be appreciated. If the new rheumo can't diagnose him, our next referral will probably be several states away to a large clinic.