Went to the hospital 2 days ago. I'd spent the night before in pain only on my left side from head to toe. It felt similar to the type of pain I've experienced with TN, for me it always starts out feeling like the worst sunburn of my life, so I tried to get through it. By morning, I felt like I'd been hit by a very large truck. It was more that I could handle and my wife had already left for work (over an hour and a half away in San Francisco's morning traffic) so I called for an ambulance. I'm going to regret the cost later, but it was difficult to walk at that point so it seemed like my best option.

The first doctor said it was a severe migraine, and gave me morphine. There must have been some disagreement somewhere because the 2nd doctor asked for my history of family illnesses, gave me a sensory test, and hinted it was MS. After 4 successive motor/sensory/sensation tests by 4 different doctors I was told by the head ER doctor that I have polyneuropathy. He said it could mean anything and to keep my appointment with my neurologist in 2 weeks. (I've already waited 2 months and he can't see me any sooner.) While being checked out to leave by 2nd doctor who said it was MS, he told me he really thought he knew what it was, but the head doctor interjected that they could not officially diagnose neurological conditions and numerous illnesses involve polyneuropathy so I'll have to see my neurologist for any real diagnosis. They tried to send me home without any medication and when I asked for lidocaine patches, they gave me Percocet and sent me home.

This explains so much about why my health has been in decline for the past decade. I've been diagnosed with a lot of odd conditions,Thalassemia Minor, IBS, arm and leg tremors, stomach polyps, REM sleep disorder, sleep disorder seizures, and the latest - Trigeminal Neuralgia, but no doctor has ever been able to connect the dots. I don't want to have one more thing, but if it's the thing that encompasses all of my illness and has readily available treatment options… I don't want to say that I'll take it, because I don't want any of this, but I guess I will have to when the time comes.

I asked my wife what we should do if the neurologist says it's anything "major". Her take on the situation really surprised me. She said it doesn't matter what any doctor says because it is already major. It puts my life, our lives, on hold, quite often and without warning. My perception of a good day being having few enough symptoms such that I am able to leave the house for longer than an hour doesn't make it not major. It just means I've compromised my expectations based on my disability. I live in limbo. I try to find happiness and do what I can, when I can. It doesn't mean what's happening to me isn't major.

I feel so bad for you. I felt so sorry for myself yesterday, but this just slapped me back. I am sorry that we are at the mercy of the medical community. I am so glad we have someplace to get support. Hang in there.((((((-))))))

Thinking of you. Hope you get some answers soon, living in limbo is not fun, been there done that, am currently there. Neurology is a vast field and I’ve learned it’s a process and elimination thing that could take time…hopefully for both our sakes someone figures it out soon! (( hugs)) mimi