still with no diagnosis
This forum is for questions and support regarding neurology issues such as:
Alzheimer's Disease,
ALS,
Autism, Brain Cancer,
Cerebral Palsy, Chronic Pain,
Epilepsy,
Fibromyalgia, Headaches, MS, Neuralgia, Neuropathy, Parkinson's Disease, RSD, Sleep Disorders,
Stroke, Traumatic Brain Injury

I haven't looked at this forum for a long time, but just came up on it today and saw your post. I have been struggling with some symptoms for about a year, more severe since May. I have what feels like vibrations in my head and sometimes they are full body or upper body, but generally feeling like an electrical charge going through me most of the time, muscle twitching and some shoulder jerking and abdominal contraction-like symptoms on going to sleep.
I often get a sick feeling/taste in my mouth, feel like my brain is in a blender - a hard vibration. Thought initially it was a sleep disorder, as it seemed to cause severe insomnia in May and June, with continued insomnia now, but now that is a little better since starting estrogen for what appears to be menopausal state on the last blood tests in August. I still rely heavily on sleep medicine to get 5-hour stretches of sleep. It has been a long drawn out work-up with a few mis-steps along the way, and the MRI was assumed to be normal, but no one really knew what it said. It was done at a different facility under a different doctor than the ones I am seeing. Anyway, they are referring me now from Sleep Neurology to General Neurology and getting another MRI and EEG, and that is the next step. Meanwhile, a year of feeling lousy and letting things slide in my life has put us in a bad situation. I am the breadwinner and have a lot of people relying on me, and I have just felt lousy for so long. I am actually leaving my career and selling my house because I cannot be sure I can function like this much longer.
STUDIES
CT in May - mildly prominent lateral ventricles
MRI in June - .....nonspecific punctate supratentorial white matter lesions - something about possibly from prior trauma or small vessel disease - consider gamut of white matter diseases. (It did say it was not an acute abnormality and did not represent the usual distribution for multiple sclerosis).
C-spine: Severe stenosis and narrowing of the neuroforamen -anterolisthesis of C4 on C5
EEG in June - was not able to sleep, but was a wake EEG and was not abnormal.
LAB: Sed rate elevated for last year. Ferritin elevated on three different tests, not significantly.
Random blood glucose: Normal limits.
Calcium, magnesium and B12 studies normal.
I did have severe head and neck trauma about 30 years ago. I am feeling the problems in the neck, but am curious about the MRI results and what that could mean, and is it really that abnormal or more of a common thing. It was coded as Abnormal, but I wasn't sure how significant it sounded.
I also had fusion and laminectomy of L4-5-S1, about 25 years ago. Intermittent sciatica, but no real pain from that area.
I've had a few episodes of feet getting cold and not being able to warm up, then tingling and severe pain for awhile. This has started happening in the last few weeks more frequently, although it has happened a few times through life that I can recall. Occasionally get a sharp stinging pain to a toe or a finger (that's probably not that unusual)
Had two cataract surgeries in May. Have had three episodes of flashing lights at night or upon rising, but no headache followed. No history of headaches or migraines at all previously. Saw a pscyhologist in the spring, who referred me to neurology.
My last 'question'? Can prior head trauma cause problems later on in life?
So my rheumatologists sends me to a neurologists because I don't have enough Dr's right ha ha, after my seizure and they up my neurontin to 300mg 4xday and put me on topamax for headaches and the seizures 1xday. Well now that I'm all doped up weeeeeeeee!!!! The burning in my legs and feet are getting worse and I have no feeling in both my hands and arms. My dr can literally stick my with safety pins in my hands, arms, feet, and shins until they bleed and I can't feel it. I can't tell if things are hot with my fingers anymore which really sucks I'm always burning myself. My grandma's always yelling at me,like I do it on purpose. Finally they did nerve conduction tests on both upper and lower extremities and came up with polyneuropothy. Probably form the lupus which now has gone systemic I found out in the last 6 months. And I'm not telling you all this so you will feel sorry for my. Because, yeah some days I think why me, but I've learned to just take one day at a time. I have my daughter who I had at the age of 18 had i not had her then I would have no children. Because I obviously can't have anymore children. So my feeling is everything happens for a reason. I know right now it is hard to feel that way. and some days are worse than others. But hang in there. Your day is coming!!!! Oh I forgot to tell you they took my off the Neurontin and put my on Lyrica and it helps me with my pain better I can at least sleep at night. well sorry this was so long. Just hang in there and feel free to write back.
Thanks, lilneuro!