Sometimes it's one moment at a time

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When I was diagnosed it came as a shock!

i believe I had been having small symptoms for the better part of 20 years. I have complained of ear aches, tooth aches, eye pain and double vision, weird numb feeling on my tongue, a tingling in my cheek. Then one day the ear ache sent me to urgent care, then it went from that to my face swelled, then the tooth pain and the jaw pain upper and lower. As the day went on it got worse and worse till I felt I would go out of my mind. 

 

I was was seen in the ER and they said it was shingles, a TIA, stroke and much more. But it was none of that. They hospitalised me, then sent me home still with no real answers. I went to my neurologist who said he suspected it but needed an MRI. A week and a half later I spent 14 hours in Vanderbilt ER, got an MRI and was formally diagnosed with type 1&2 TN on the right side and type 1 on the left.  It has been hard to deal with as I'm still in pain a month later, but I have found a great NATIONAL support group that has helped me when I had questions, and kept me from freaking out when my meds haven't taken the pain 100% away right away.

 

talk to your family, learn about your disease, you are not crazy or weak, and all those symptoms you have had over the years that could t be explained, probably make sense now.

 

some folks may say you are making things up, don't let them get you down. What's important is your family your doctors and you know the truth, as they are your care team, all the rest is just noise.

 

i wouldn't wish this disease on anyone, it is not well known or understood and hard to explain. I'm sorry you are part of the club.

 

when the days are hard, take it one moment at a time, before you know it you will be halfway through your day, then next you will be in the next day and that is a mountain to climb.