Discussions By Condition: I cannot get a diagnosis.

This thing is ruining my happy life

Posted In: I cannot get a diagnosis. 4 Replies
  • Posted By: Anonymous
  • January 18, 2010
  • 05:29 PM

I have had this condition for about 30 years (early 80s). All of a sudden, and I mean one minute nothing, the next I got these symptoms! I felt numbness and burning in my lower lip. My tongue felt swollen and swallowing normally was difficult. You know how swallowing is involuntary, like blinking?.... not for me.
I didn't know what the ***l was wrong. For a couple years, maybe more, I just lived with it. By the way, it is constant. Except when I'm asleep, I am aware of the symptoms.
I went to a dentist who said my impacted wisdom teeth could be pressing on the mandibular nerve, so he pulled a couple of them (nightmare --- another story). I went to an allergist --- nothing.
Then I went to a neurologist, and when I told him I had genital herpes, which was an AFTERTHOUGHT on my part, and he said …. Aahhhh.
He explained that herpes can cause nerve damage anywhere in your body. He gave me a prescription for Klonopin. It was like a miracle and I was so pleased and happy with the results. As long as I took my medication and lip balm or lipstick helped, I was about 80% symptom free….for close to 10 years, and then the symptoms started getting worse.
I went back to another neurologist and he kept me on the Klonopin and added Neurotin. Again, like a miracle the symptoms subsided, along with constant lip balm or lipstick.
That was back in 1996 or 97.
It is 2010 and the symptoms are back with a vengeance. I went back to the neurologist who suggested I may have trigeminal neuralgia. GREAT, finally a diagnosis. He sent me to the TOP doc at UVA for possible gamma knife treatment. The doctor looked at my MRI and said “NO”. It did not look like trigeminal neuralgia to him.
I went back to my neurologist who then sent me to Georgetown University Hospital. Same story. They said it did not look like trigeminal neuralgia to them either.
I know that doctors sometimes just DON’T have an answer for you, but why do they just look at me with a blank stare and basically say “there’s the door”? Why can’t I find a doctor who is willing to work with me to finally figure out what’s wrong?
This thing is ruining my life. I typed in my user name “I want to have a happy life” because that’s the first thing that came to my head. I am an outgoing person. I have a beautiful 23 year old daughter, a home and a wonderful boyfriend who has told me I can go to whatever doctor I need to to find an answer. JOHNS HOPKINS, NHI, wherever!!
I have other medical issues. I’ve got arthritis in my thumbs. I’ll live with it. I’ve got tinnitus. I’ll live with it. I’ve got irritable bowel syndrome. I deal with it. I’ve got herpes, okay, I’ll live with that too.
But this UNDIAGNOSED/MISDIAGNOSED “thing” is making it impossible for me to live my life. I can’t talk. I can’t have a conversation because my lip is burning and my tongue feels swollen and I can’t swallow normally. It’s SO weird, because I feel like I’m going to drool, but thank God, that doesn’t happen. YET!!
If there’s anyone out there who reads this and knows anything!! Anyone who has a suggestion!! A doctor that reads this and it sounds familiar to him or her, please write back to me.

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