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Wed, May 6 9:33am · Voice Loss: I've have had no voice for almost 3 Years in Ear, Nose & Throat (ENT)

My speech began to noticeably decline in 2018-I was working as a Senor Case Technician but was forced to resign because people could not understand me over the phone, and it has since considerably worsened I have problems swallowing. I've had nerve conduct study and doctors concluded it is not a nerve issue. My jaw quivers and at times my mouth locks shut and I can't speak at all. It has caused me to have a drooling problem, my former Speech Therapist told me to make certain I am proactive in constantly swallowing to prevent drool. I have seen many doctors trying to resolve this to no avail. I have several things going on – I have Spinal-Cerebellar Ataxia and my current doctors are still trying to determine the cause so I can receive treatment (if there is treatment – my former Doctors told me my cause was Genetic and there is no cure). My current doctors did bloodwork – GAD65 (came back positive) – and want to do further diagnostic tests – CT of my chest, abdomen and pelvis – looking for tumors, also want to do Lumbar Puncture and possibly IVEG blood replacement based on the diagnostic tests results. HOWEVER, my current doctors have indicated to me that my Speech Impairment is not due to Spinal-Cerebellar Ataxia. I have family that needs me, and am working with my current doctors to find cause and hopefully the cure. I did suffer a trauma to my neck prior to loss of Speech.

Wed, May 6 4:49am · Voice Loss: I've have had no voice for almost 3 Years in Ear, Nose & Throat (ENT)

Hi, I have a problem similar to what you have described that is both ongoing and worsening. I have a link to National Institute on Deafness and Other Communications Disorders (NIDCD) – https://www.nidcd.nih.gov/health/voice-speech-and-language – please copy and paste in your browser. – there is a lot of good information that may be helpful. I have all the symptoms for Vocal Fold Paralysis. It is very difficult for me to talk – I whisper sometimes other times I have to yell in order to get the words out. I am going to Fixel Institute – University of Florida – Shands Hospital for examination, therapy and hopefully treatment. I hope the URL above is helpful to you. This disability has made me acutely aware of the plight of Speech impaired people – there is no effective Communication accommodation(s) for Speech Impaired people.

Oct 22, 2019 · Cerebellar Stroke - experience/treatment/recovery in Stroke & Cerebrovascular Diseases

I understand your frustration, I have been "passed around like a Hot Potato" since I had what I was told was a Stroke in 2012. I lost the use of my Right side. (I have been a paralegal for over 40 years (real estate/probate law), I can no longer type, fine motor skill loss, cannot walk without cane, impaired Speech/Hearing.) My Primary Care Doctor says I have several things wrong with me (but he doesn't tell me what they are???) He just sends me to more and more doctors. My Employer removed my Existing Work Accommodations so I could no longer do my job (right before my 65th birthday) so now. I am also dealing with having to live on a 1/3 of my prior income and dealing with being passed around like a hot potato. My daughter's Primary Care tells her to "Go to the Emergency Room" when she has a problem, then the Emergency Room Doctor says "Go see your Primary Care." I think this is a bad joke! But doctors are making lots of money. Patients have very little recourse from my observations! Doctors have financial interest in Insurance Companies – that is severe problem for patient receiving quality care.

Oct 14, 2019 · Stiff Person Syndrome in Brain & Nervous System

Thank you, this is more helpful than anything doctors have done for me. Thank you.

Oct 14, 2019 · CRPS in Chronic Pain

True – but I was raised in a large Christian family (12th child) to believe you do your best and God will do the rest.

Oct 13, 2019 · CRPS in Chronic Pain

I recommended my doctor read Compassionomics: The Revolutionary Scientific Evidence that Caring Makes a Difference written by physician-scientist team Stephen Trzeciak and Anthony Mazzareli as it provides overwhelming evidence for the healing power of compassion. As a patient very adversely impacted by Physicians callous lack of compassion and discriminatory treatment of me, a handicapped person, I strongly recommend Doctors read this book, put its content to work into their practice and those of their students/staff. Truly, no one knows the human body better than God – He created us. I am praying for our healing in Jesus name. I am praying for Doctors to be compassionate in patient care.

Oct 13, 2019 · CRPS in Chronic Pain

You have very well stated my assessment all the way down to my having had enjoyed excellent health all my life as well – until now. I have a 3 page list of Neurological, ENT, Spine Surgeons, etc., yet I am treated like a "hot potato" passed from doctor to doctor. I have letters from Doctors firing me as a patient because I ask too many questions. One doctor I saw at a teaching hospital yelled at the Resident who actually spent time with me reading my file, that "You need to move on, there is a full room of patients outside!" My faith and trust is in Jesus.

Oct 13, 2019 · CRPS in Chronic Pain

You are right, its best to be Proactive and read everything you can. I find Doctors are severely lacking in compassion, and are more interested in numbers. I feel like a "hot potato" passed from doctor to doctor because I ask questions. My trust is in Jesus.