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TBI, abnormal EMG, High Anti-GAD

My wife hit her head hard enough to have a syncopal event. She has cognitive issues with word finding and retrieval (liken to expressive aphashia).  A NeuroPsych diagnosed Post Concussive syndrome. None of the structural studies (MRI, CT, etc) provided any positive findings, and the symptoms lasted over 1 year. But on my physical exam (she is my wife) showed unilateral muscle atrophy in 1 lower extremity.  An obscure repeat EMG showed activity in 3 of 4 limbs (anterior horn disease), and a prognosis of possible ALS came about. Not wanting to hear that my beloved wife might be dying, before my son reaches high school, we pressed on.  A second opinion; a trial of IVIg; and an improved second EMG; and we are left with MMA (thank God it is not ALS).  It is not MS, Lymes, Diabetes, or a gazillion other possible diseases either.  An anti-GAD came back >800 and we are asked to accept "Stiff-man's".  None of the esteemed specialist we have seen want to include the head trauma into the equation, and dismiss this as an incidental finding. Her symptoms are difficulty with word finding and expression, severe headaches (vomiting), thigh atrophy, and excruciating pain in her hip and thigh (she describes the feeling of bugs eating her muscles).  Do any of you open-minded and brilliant Neurologist know anything about something which presents like this and is associated with a Traumatic Brain Injury?
2 Responses
Avatar universal
Hi,
To begin with I am not a Neurologist but I had a TBI and suffering with Post Concussion Syndrome.  I have seen 4 Neurologists so far and not much help.  When it comes to PCS (Post Concussion Syndrome) most of the Neurologists don't have much idea (one of my Neurologist googled after I mentioned to her right here in Washington D.C. metro) and you can find a good one if you are lucky.  Some of the medications they might try which can relieve the symptoms but not a cure.
Again for PCS you have to find other alternative therapies like Neurofeedback, HBOT, Cervical Chiropractor etc.,  Some people have no success with anything and try for Stem Cell Therapy
I am not too surprised they want to include Head Trauma because then they will be lost too and don't want to agree.  Some of your wife's symptoms are very typical for PCS.
good luck.
Avatar universal
Thanks for the response. I agree with your view of the limited scope of exposure some of the Neuro's have regarding rare & complex illnesses. The first 2-neurologist and neurosurgeon found nothing wrong with my wife and suggested counselling. The MDs from the University Hospitals found the Anterior Horn Cell Disease, but refuse to include the cognitive word finding issues as part of the diagnoses. She has been treated with the usual courses of Steroids, the GABApentin, EMG guided trigger point injections, facet blocks, RF Rizotomy, acupuncture, PT, and my all-time favorite IVIg infusions for 3-days every 3-weeks. My main hope is that I will find some as brilliant as Dr. House, without being a wreckless and billigerant drug addict. The NeuroPsychologist that diagnosed the PCS feels that it should resolve after 12 months, and for someone to be getting worse after that period of time, there is probably something pathologically worse going on, or she is the 1:1000. If she has "Stiff-Man's", my wife will be closer to 1:1,000,000. Best-of-luck to you. Check out Dr Ahmen,s research with Spect Scans-interesting.
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