Question: I have a history of neuropathies. Mayo clinic was 100% sure it was hereditary neuropathy with liability to pressure palsy. My neurologist at the University of MN thought it was either just idiopathic or part of a inflammatory response. I woke up twice with facial droop on the left which resolved both times within an hour. MRI showed no signs of CVA or anything that would explain it. My current problem started waking up with the left side of my throat being numb. This then proceeded to gradually get worse. At first they thought it was reflux, but a ppi and zantac did nothing. . Ine morning I woke up feeling like I was choking. I went to the ER where they diagnosed esophageal spasms. My primary increased my baclofen to control the dpasms, but also because there is research into giving patients baclofen for refractory relux. I had a brief time when symptoms were better, but then whatever this is came back with a vengeance. My current symptoms are voice hoarseness, at times some upper airway wheezing, a feeling of globus, pressure and pain on just the left side of the neck, throat feeling full, especially after eating ( its like eating makes the symptoms worse ), numbness in my mouth, a feeling of fullness not only in my neck but sometimes going up into my left ear , along with my left ear ringing, and electric type shocks that will be like a quick zap to my mouth, and if you push on my neck, the symptoms can be reproduced. I have never had trouble swallowing but sometimes I can cough up undigested food that has gotten trapped in my throat. I have also noticed that I have started to cough whenever I take a sip of fluid, I try to suppress it, bit it doesn't work. Its not a cough like I am aspirating. If I try to supress it, I will have a coughing fit. I also have been waking up in the middle of the night , not SOB, but have this air hunger like I can't get a deep enough breath. I also feel when I bend over, when I stand back up, I am having very mild DOE. I have had an EGD, a video swallow, and an MRI of my cervical spine, which were all normal. An esophagram showed a slight delay in the motility of the esophagus. I saw ENT today, and they were of little use. Its a relief to rule out a mass, and impingement of a nerve at the cervical level, but at the same time I am miserable . I have tried carafate, and GI cocktails to no avail. This is further compounded by the problems I am having with my legs. I had a scs trail in XXXXXXX Within 24 hours, my legs were giving out. First, I was dragging around my left leg, and having neuropathic pain and was having myalgias in bilateral legs. I was having severe muscle cramping in my left calf at the time. Now both of my legs are stiff, having severe muscle spasms bilaterally, severe myalgias bilaterally, neuropathic pain bilaterally, and sensory changes including a feeling of vibration from my groin down to my toes. I know have to use a walker because even though there doesn't seem to be any apparent weakness, I can't get off the tiolet, and almost got stuck in the bathtub. When I wake up in the morning, I can barely stand up because of spasms or because my legs are numb. I also have started to have nerve pain in bilateral hands/ forearms, which has happened in the past, but was related to POTS. I don't believe there was any damage done by the scs. I did have to be hospitalized because they " nicked" somewhere and caused a csf leak. They did not do a blood patch, even though they said they would after 24 hours of bedrest if I was still symptomatic. I had a postural headache and vomiting at 48 hours, but they just did bedrest. The only problem I had after 72 hours was a postural headache for about a month. They did do imaging of my lumbar spine and it showed a disc extrusion that I had for 2 years at the l3/4 level and was no longer impinging on the nerve root. I am wondering if the surgery set off some type of neurotitis. My medical hx includes ulnar and peroneal neuropathies, Postural Orthostatic Tachycardia Syndrome, post viral syndrome, mononeuropathies multiplex, chronic radiculopathy in left leg, terminal iliitis, chronic leukocytosis with eosinophilia, chronic elevation of CRP, hx of right foot drop, my surgical hx is :
disctectomy x2 at l4/5, TLIF at l4/5, I dihisced my internal sutures after my TLIF( which was missed by local doctors for 7 months) so I had an I&D of wound with fascia repair, failed fusion, insertion and removal of scs. I have had elevated sed rate and a positive XXXXXXX I can't live like this anymore, I am stuck with local doctors as I am unable to travel to the University of MN or Mayo to see my neurologist and its really a substandard level of care in my area. Even if I woke up tomorrow and couldn't walk, its not seen as an emergency unless I was dying.