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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4 Replies:

  • 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. I would do a diary and look into chemical and food allergies. My aunt goes through something like this and the docs think it is something inhaled or ingested.
    cozynana 39 Replies
    • January 18, 2010
    • 06:13 PM
    • 0
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  • Sounds like a food allergy, too. Do you drink diet pop? Use artificial sweetener? Use MSG, food coloring in anything? Preservatives, mercury fillings, etc. The list goes on and on. It can, too, also be that you have herpes 1 and your immune system keeps it going for you, along with the stress. Have you tried acupuncture? It can do some amazing things. Lauricidin also calms down both types of herpes. It can do a lot of nerve damage. www.lauricidin.com By the way, I am not certain but I don't think those two drugs mix. You should check with the pharmacist. It looks like you should have taken one or the other. You should stick with the first doctor.
    Monsterlove 2921 Replies
    • January 18, 2010
    • 07:18 PM
    • 0
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  • I agree with the other posters, chemical or food allergy. Could be environmental or food chemical. If the drugs have stopped working, most likely you have built up a tolerance to the drugs or the problem has grown substantially worse (while being masked by the drugs). Do you eat conventionally grown foods? I mean fruits and veggies grown with pesticides and herbicides? Do you eat processed foods? Do you drink (chemical laden) sodas? Artificial sugars? High fructose corn syrup? How clean is the water you drink? I could go on and on. Start reading labels, you will be very surprised. Do your own reasearch on the ingredients you are putting in your body. Do you live near pollution? Do you use chemical bathroom cleaners? Do you use air freshener? Do you use chemical toothpaste vs the natural types? Hair color? Conventional shampoo? Conventional mouthwash? I could go on and on.It could be any of these things, they all create toxic loads in our bodies which get greater and greater as we age because they accumulate. The more you put in your body, the faster they tend to accumulate.Find yourself a good naturopath physician. They are far better at working with these types of problems than a conventional physician. Conventional physicians will just write you an Rx, good naturopaths will work at determining the cause of the problem. I would tell the doc that is your goal at your first visit so you set the expectation on day 1. Conventional allergists, at least in my experience, have not been helpful unless you have hayfever or some very common allergy. Even then they just write an Rx and send you on your way. You need to research these things on your own to educate yourself so you can be your own best advocate. Try Dr Mercola's website and look up general terms to get lots of other information. You can persue it from there.
    Anonymous 42789 Replies
    • January 19, 2010
    • 03:27 PM
    • 0
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  • Sounds just like Hypothyroidism to me, which can cause all of the things you are experiencing. It is more common in women, and the chances of having it increases with age. Go to the doctor and demand a full thyroid assessment.
    Anonymous 42789 Replies Flag this Response
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