- CASE FILE
I have lost my ability to speak. Over 16 neurologists have no idea why. People think I am deaf or mentally challenged, I am neither.
ABOUT THIS CASE FILE
I am seeking help because I can’t talk anymore. I have lost my ability to speak or articulate words in a way that can be understood by other people. I am forced to write on a mini white board that I carry with me, or on a piece of paper to communicate. I made cards to give people to say that I have a speech disorder, that I am not deaf or mentally challenged. People think I am because of how I speak. I am in constant pain and often have debilitating headaches. My lips and tongue are numb, tingly and swollen, my jaw is stiff and inflamed. I have an infection. It showed up in a test and I can feel it in my head.
I am a professor at an ivy league university but I can’t teach anymore. Right now I am on long term disability with the hope that this will be figured out and I’ll be able to talk and teach again. I am a sculptor as well and this has made me so tired I have a hard time working, and I’ve had to turn down exhibition opportunities, as well as visiting artists invitations. I used to be a very social person but this inability to communicate has shaken me to my core and I’m a hermit now. I am so isolated. The days are hard to get through so I write lists to make sure that I get things done.
I have seen over 16 neurologists, my primary care Dr., a surgical pathologist, speech pathologists, chiropractors, a Naturopathic Physician, Biologic Dentists, had acupuncture, EMDR therapy, Cranial Sacral Therapy, Reiki, MRI's with and without contrast, a muscle core sample biopsy on my jaw, electric tests to my face and tongue, botox injections in my jaw, myasthenia gravis evaluation, syphilis serology, SLP video fluoroscopic swallow study, been misdiagnosed with spasmodic dysphonia, then oromandibular dystonia, and then the neurologists thought I might have oculopharyngeal muscular dystrophy, I don’t. My Naturopathic Physician found an infection so I have been taking antibiotics which really helped with the pain and swelling in my jaw. I also had cavitation surgery and had four teeth removed that had infections from failed root canals.
I also have had these tests or diagonosis: syphilis serology, heavy metal, myomarker panel 2, CK, HIV 1/2 antigen and antibody, 4th generation, hemoglobin A1C, vitamin D, musk autoantibody, FL swallow function (modified barium swallow), Echocardiogram, MR Head with and without contrast, orbits for foreign body, PTH Intact,Comprehensive metabolic panel (CMP), Anti nuclear AB (ANA), IFA, SSA/SSB Panel, CK (this test measures the amount of an enzyme called creatine kinase in your blood), SED, Rate:westergren, C Reactive Protein, Rheumatoid Factor, LDH, ANCA, TFA, Celiac Disease Panel, Calcium, Phosphorus, Immunotyping/Spec, mono prot, u ran, Thiamin (vitamin B1), WB, Anti DNA (Double Strand),Copper, Serum, complete blood count and differential, CBC, Lyme IGG & IGM Antibody, Malaria Smear, Hemogram, Differential, Automated, TSH, MRI Abdomen with/without contrast, Thyroid Peroxidase AB, T4 Free, T3 Total, TSH, CBC, Vitamin D, 25 Hydroxy, Basic Metabolic Panel, Hepatitus C Antibody, Hemogram, PTSD Post Traumatic Stress Disorder ,Tick borne illness co-infection, Infection, Dysphonia, and Sleep Disturbance.
No one knows what I have and why I can’t talk anymore. Please help me so that I can have my life back.