Hmmm.. thats got to be quite miserable & I am sorry that you are not getting any answers that you need to help you cope & feel better. I cant say that I know what you are going thru, but I have many weird, painful issues that I cannot seem to get any answers for so I do know the frustration that can cause you. I had a friend once who had his face go numb on one side & they thought he had a stroke but it wasnt it was something Barr Syndrome??? not really sure but something to check out & investigate. He did eventually get better so there is hope if that is what it is.. I sure hope you get your answers & get better real soon... Take care & try not to stress.. that can make any flare of issues worse!
This may be helpful. I believe this is what my friend had & his did start in his face from what I heard, but please do more research to see if it matches up to your symptoms & bring up your concerns with your doctor if you think this may be your case as well. I dont know but its worth investigating??
Guillain-Barre syndrome often begins with weakness, tingling or loss of sensation starting in your feet and legs and spreading to your upper body and arms. These symptoms may begin — often not causing much notice — in your fingers and toes. In some people, symptoms begin in the arms or even the face. As the disorder progresses, muscle weakness can evolve into paralysis.
Signs and symptoms of Guillain-Barre syndrome may include:
■Prickling, "pins and needles" sensations in your fingers, toes or both
■Weakness or tingling sensations in your legs that spread to your upper body
■Unsteady walking or inability to walk
■Difficulty with eye movement, facial movement, speaking, chewing or swallowing
■Severe pain in your lower back
■Difficulty with bladder control or intestinal functions
■Very slow heart rate or low blood pressure
Most people with Guillain-Barre syndrome experience their most significant weakness within three weeks after symptoms begin. In some cases, signs and symptoms may progress very rapidly with complete paralysis of legs, arms and breathing muscles over the course of a few hours.
When to see a doctor
Call your doctor if you have mild tingling in your toes or fingers that doesn't seem to be spreading or getting worse.
Seek emergency medical help if you have any of the following severe signs or symptoms:
■Tingling that started in your feet or toes and is now ascending upward through your body
■Tingling or weakness that's spreading rapidly
■Tingling that involves both your hands and feet
■Difficulty catching your breath
■Choking on saliva
Guillain-Barre syndrome is a serious disease that requires immediate hospitalization because of the rapid rate at which it worsens. The sooner appropriate treatment is started, the better the chance of a good outcome.