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Trigeminal Neuralgia Secondary to What???
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An_246168 posted:
I am new on this board and actually doing research for my dad. After going to the doctors office and specialists without receiving any answers, I am hoping someone out there has some info that we havent found yet.

My dad is 56 and was in perfect health 3 years ago. He was atheletic and very active. He had a respiratory infection, went to the doctor and seemed to be getting better except for keeping a cough.

Soon after that, he noticed a circular numb spot on his cheek roughly the size of a nickel. He said it was numb through and through.

Over the next few weeks, the numbness increased and he developed a number of symptoms: excessive saliva, cough and he developed thrush. After many trips to the doctor, the thrush finally cleared mostly on its own, but he still had the cough and saliva.

Over the next few months, the numbness started migrating around his face until half of his face was numb through and through. When I say through and through I mean half his tounge, gums, one eye, ear, scalp everything. He began having trouble eating as he could not feel his food on the one side and would cause him to chew his jaw and tongue on the numb side. He started having shock-like pains on the numb side around this time so he had an mri done which showed inflammation on one side of the trigiminal nerve.

During this, he started having trouble with his blood pressure. It stopped regulating itself from sitting to standing positions and this caused him to pass out driving on morning on the way to work.

Over the next month or so, the numbness continued around in a clockwise motion until his entire head became numb. he had a second mri done which now showed inflamation on both sides of the trigiminal nerve and he now experiences the shock pain on both sides of his face. Except for the pain and numbing sensation, he has no feeling above the neck through and through. He has lost down to 120lbs.

He passed out a work last year and began short term disability which transitioned to long term disability earlier this year.

He has to continually drink fluid because he has lost the sense of swallowing saliva and he will drool without knowing. His nose will run, and he can not tell. He has trouble taking meds and eating because he can not tell if he has swallowed his food. He has gotten choked on food still in his throat before and is now on almost all liquid diet.

He is now completely disabled. We have been to every specialist in town and traveled to a specialty hospital out of town with littlt help.

he has been diagnosed by 1 doctor with trigiminal neuralgia but they state this is a secondary diagnosis to an unknown problem.

Also, one more thing worth noting is that he has developed reflux during this and now also has barretts esophagus. It is almost like the stomach sphincter has weakened. if he leans over after drinking, the liquid will come out through is mouth and/or nose just like turning a glass over.

I greatly appreciate you reading our story and hope someone out there can give us direction so I can help my dad have a better quality of life

By the way, he has been checked for: MS, Toxins/Poisons, HIV, Cancer, sjogrens, limes and all te usuals.

He has had: spinal taps, mri, ct and countless bloodwork.
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Caprice_WebMD_Staff responded:
I don't have any ideas for you to explore and I'm not sure anyone else here will either but you never know. I just wanted to welcome you here. Your father's story is heartbreaking and I hope that you all continue to aggressively pursue answers with his doctors. Perhaps start contacting the big medical centers such as Cleveland Clinic, Mayo Clinic, Duke, etc.

I hope answers are found soon and that those answers will mean effective treatment. (((hugs)))
We must let go of the life we have planned, so as to accept the one that is waiting for us.
~Joseph Campbell
 
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babyred1975 responded:
Hi , frist let me say how much I hope your dad finds help/cure , I am 56 yrs old and disabled 7 yrs with nero condition I had never heard of and had been an RN for 18 yrs at dx ,do what I did get to biggest teaching hospital in your surrounding area , Neuro md, to start, at teaching hospitals all latest treatments ,procedures ,meds ,are avalible,Doctors are up on obscure problems ,it may take a bit ,but dont wait ,since progress so quick and loss is huge try to grt in ASAP, I dont know what your dad has but Im sure someone does ,if like me the condition is uncommon it may take some time ,just dont give up ,its hard to be young and lose so much ,very difficult to find where we fit ,telldad dont give up hope ! babyred1975
 
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annette030 replied to babyred1975's response:
Ditto what she said.

Please see a doctor at a teaching hospital as soon as you can.

I am also an RN with a neuro condition that I had never heard of when I was diagnosed in 1995. I had been an RN for 25 years when I was diagnosed.

Take care, Annette


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