Hey Kara,
Sounds like your pain has been pretty bad. I did what you're doing and just kept going to my ENT until he couldn't figure what this pain was. I became desperate then kept going to my internist, who I happened to work for right before all this began. I had worked for him about 10 yrs, so he knew when I kept calling and complaining about this throat pain, that something was wrong. It was going to see other doctors that I felt they weren't sure about this pain. It is getting better with time how doctors are learning more about these neuralgias. It was a pain doc that I was referred to who got with trying to diagnose my pain. It was diagnosing it that took forever, and my ENT was someone who was pretty well known, didn't even have a clue, but diagnosed me with TMJ at first, well kind of? I'm not sure he ever really knew, just had to write something down. I don't know where you live but sometimes calling local hospital either ER's, referral offices, or even the hospital's human resources dept. may be of help when finding the right doctor in your area. You'll probably need a referral to see a pain doctor from your main doc, and it's probably a good idea to have your primary doc check you out regularily esp. with something chronic like GPN. I remember seeing a neurologist when I was trying to get diagnosed, but really wasn't impressed and never went back. I guess after a while you learn who you feel has a clue and who doesn't. It's really unfortunate that there are so many with pain, going to ER's for relief, only to be told after being seen, to go see your internist, and no one had a clue. They always wanted to give me injections to stop the pain, but the ER docs didn't understand that the pain would be back, it wouldn't just be gone. I do think you can see a pain doctor and not actually have to be prescribed harsh pain meds, most of them are anesthesiologist anyway, who know quite a bit about nerves too. That's how I was diagnosed was through a nerve block, done by my pain dr.
Good luck in finding someone who can help your pain. The symptoms are really strange, since in most cases they all vary. I guess that's why it is hard to diagnose. You'll have to KIT and let me know about anything new.
God Bless-Kat
Kara Wilson said:
Hi Kat -
Was just reading your response to Cheryl. I am sorry you are not feeling well.
I was diagnosed about a year ago with GPN, first from an ENT, and confirmed by a neurologist. I suffered for a period of about 7 months with severe right-sided throat/ear pain. I was taking 1600 Neurontin a day which kept everything pretty much stable, and added accupuncture which helped quite a bit.
Last June/July I noticed the pain had vanished. Imagine the glee I felt. Well..........sorry to say it has returned as of last month (May). I just started takingone Neurontin a day (300 mg) and having accupuncture treatments about twice a week.
Not sure it is helping much. But I am experiencing the same swallowing type issues that you are relating. I feel like I want to swallow, but then when I try, it is delayed or something. Also, I am feeling stabbing pain in mu throat and ear, but then sometimes it itches like crazy.
I have not been back to the neuro because I have plenty of Neurontin left, and I'm pretty certain this is the same exact thing I had last year and there isn't much they can do. I have had a CATscan and MRI with contrast to the brain last year to rule out a tumor or whatever else (normal). I am wondering if I should get another opinion from an ENT?
Confusing, baffling condition indeed this is.
Nice to have this site, though! You all are great! (and brave) :)
Sincerely,
Kara Wilson