I'm a 35 yr old mother and critical care nurse. I have Ehlers-Danlos hypermobility type, advanced arthritis and all of its problems. In late spring I began having odd neurological symptoms. Before I only had EDS symptoms and migraines. These neuro symptoms began with bilateral hand weakness, bells palsy with facial droop, and a change in my headaches. By today I have a long list of weird things I've started to do. If I can, I'll add them to the end of this post. My geneticist sent me for an MRI w/wo contrast and told me to find a neurologist. With research, I suspected chiari. I fit perfectly except for the posterior headaches. Mine are temporal, behind my eyes and across the top of my head. My mri was read as normal but, being the nurse, I had to look. I didnt see a chiari but I saw what looked like crowding. I contacted Dr Tews office at the Mayfield clinic, talked to his assistant, gave him all of my symptoms and forwarded the disc of my MRI. They contacted me a couple of weeks later and sent me for a CINE mri. This mri showed implaired csf flow around the tonsils. Dr Tews office called a couple of days later and had me in for an appt within days. Of course I suspected the worst. I met Dr Tew yesterday. He drilled me about my symptoms, spent a lot of time staring at me when I ran out of answers or forgot them ( i forget everything lately), then told me the answer to my problems was weight loss. Yes, I'm overweight. Again, I'm a nurse. I know the risks. He lectured me about my weight, told me that I wouldn't get better unless I changed to a plant based diet. I asked him if I do or do not have a malformation. He told me that I have a 3mm chiari herniation and mild csf blockage. The only answer I got after that was weight loss, weight loss, weight loss. Now, I saw my cine mri. I saw my first mri. I saw 3 cervical herniations. Through all of this no one looked below my cspine, no one did an xray, no one looked for a syrinx, tethered cord, anything. And, apparently, no one is going to. With a sudden onset of symptoms that are progressing is this normal? Can my diet truly reverse all of this? And should my spine have been looked at as well? I know that a 3mm herniation isn't bad. But, I also know that nothing should block my csf flow and that the c-spine herniations should have been noted.
Included are the symptoms I've developed over summer:
long lasting migraines with visual disturbance (ie furniture moves)
headache when bending, straining
swallowing difficulty
hand weakness/loss of motor skills
restless leg/body
bells palsy
loss of taste (lasted 36 hr)
increased snoring
speech problems/word loss
brain fog/lost thoughts in mid sentence
increased fatigue
tingling face/scalp (bug crawling feeling)
pulsatile tinnitus (heartbeat in ear)
lump in throat
hiccups
mood changes
noise sensitivity
numbness in right mid back to sacral area
neck pain/ache/cramps
Notice these are not symptoms I have had for years. I've developed them suddenly and theyve progressed.