Attached is sort of a journal of my journey to find out what has been happening, discovering what is happening and growing from it. It was written at random times in the past year, so please pardon the different verb tenses and possible mis-spellings. I just wanted to share in case anyone could be helped or uplifted by hearing someone else's story and pain. Take care.
Wow...........I can't believe you had to go through THAT many a-holes to get diagnosed! Makes me realize how truly blessed I was. Good luck to you and take care of you! (((((((((((hugs)))))))))))
I’m a 30 year mother of 2. I’m totally stereo-typed as dramatic, needy, depressed, attention seeker. It’s pathetic. And I plan to fight.
Yes, don't take their crap! If you have to travel to another state to see the best, then do so!
Wow, what a horriffic story. I had quite a journey also. I can't type it all here, but it is on this site somewhere. my dds diagnosed me with this after he hit the mandibular nerve during a root canal. After, the tooth continued to hurt and an endodontist did it again, I came out of the chair with pain. When I went to him for a different reason he took my appointment and then said, "I wouldn't help you even if you did have a problem because of the way you acted last time you were here. O, yes, I guess crying in pain is unacceptable. When aI went to the first neurosurgeon he said, You are too young to have this disease (I was 40). Then I met a good neurosurgeon at MD Anderson medical center, unfortunately he and his wife died in a fire. I finally found an oncologist and neurourgeon that would do a Stereotactic Radiosurgery. To no avail so I visited a Tampa neurossurgeon and he said I had classic TN. However I continue to have pain and it was even worse. I had Anesthesia Dolorosa. When i returned to the Tampa, the doctor told me that if i didn'tt have TN then, I definitly ha it now. For 10 years I was on opiate drugs around the clock, I gained 75 lbs. Eventually I needed so much it was terrible. So one day I realized that I was going to have to live with this forever. Now i take Neurontin, Tramadol and if i need something for breakthrough i am allows to use dilaudad. i don't take more than 2/day if I have to. Another drug that has help me and is used to treat this disease is Klonopin. i wish you all the luck in the world. I also have the genacular neuralgia. I want you to know that you are not alone, we all have had quite a journey. This is very common in people with MS. Good luck and feel free to contact me anytime.
Wow, Uwfotogal, that sounds horrible, for it to happen in the dentist chair! Hugs to you. Thank you for sharing what works for you, I'm about to rub my cheek off to get this pain to go away!
I so appreciate everyone here and seeing that other people have this same pain, and to get feedback for support is so amazing, so thank you! I had High Res MRI last night, but I know this is just the beginning. I still have to see neurologist. Thanks again! Take care