I joined last year I think, before I had any diagnoses and was frustrated beyond--well, many of you know that feeling.

I finally have a neurologist who is taking my symptoms seriously. Suddenly I have 3 diagnoses to deal with and am going for more tests to confirm the diagnoses and probably make sure 2 of them are correct.

It took a rheumatologist, neuro-opthalmologist, and neurologist, just 3 visits to diagnose me with Trigeminal Neuralgia. I am taking 200mg of Tegretol, 3x a day. Right now that is working well. I also eat a semi-soft diet and avoid triggers as much as possible.

Right now I have diagnoses of Sensory Ataxia and Orthostatic Hypotension. I go for a tilt-table test next month. I will also have a 2nd EMG and possibly a Brain MRI of my facial blood vessels to see if there is an vascular compression of my facial nerves.

I am fairly disabled by all of this yet keep trying to move forward. I don't know how to tell the doctor how all these symptoms are impacting my life--I did with the balance/fainting stuff, but think I was too afraid of her thinking me crazy or complaining or lazy if I told her. I didn't want to get told I was crazy by one more doctor. I couldn't handle that.

Right now, I never know how I will feel and what I will be able to do day from day. I am frustrated.

I am 55, my career is on hold. Today is not a good day. I feel very alone with these disorders and not sure how to help my family and friends undertand it either. My usually positive personality is buried under this. I just want a diagnosis and want it now. Not patient anymore at all.

Bad day today--thanks for reading. Look forward to posting and reading what you all are posting.

lifesaver