I get that pain is a hard thing for others to relate to. I used to have a hard time finding sympathy when my friends had headaches. I never get them.
But when you go to the doctor with neuralgia - you would hope they would accept that you are telling the truth about your symptoms.
Not always! My MRI results came back negative for any compression on my nerves. My doctor's response was to suggest that I had researched the symptoms and come to him with the perfect description of geniculate neuralgia. Really disappointed. Irene
Seems like it might be time to look for a different doctor. Have you checked with the FPA for a recommended doctor in your area or the doctor tab on this site? I found my new neuro thru a call to FPA. His demeanor was opposite (in a good way) than my previous neuro and I was so much more comfortable talking to him. I think most of our MRI's come back negative for compression which doesn't mean there isn't one.
What a jerk! Ive been dealing with that too, but they are just doing their jobs. Its tougher when you dont have any energy to fight back, which is what the doctors want to see, so they know you are telling the truth. After all they dont know you and your asking for care they really dont know much about apparently.
This pain drives me crazy, but after facial cream 4 times a day (compound), gabapentin, carbamazepine Nsaids, restricted diet, I can now think sometimes.
Just not good at all. So many have no visible MRI proof of TN. Why would anyone make this up? Without it we should all be busy having great, painfree lives! GRRRRRRRRRRRRRRRRRRRRRRRRRRRRRR!
I think it must be hard for doctors to really comprehend TN without some experience and training about the disorder. My MRI showed nothing either. No “reason” for there to be pain. No physical signs of it. Just me crying and holding my face…
What would we say to a kid who came crying to us about a painful bump without a bruise? I know it’s not the same in magnitude, but it is in kind.
I totally agree with the prior post: if your doctor is unable to see the signs, then you need someone who can and will help, and now!
Thanks guys. It's good to hear that others had negative MRIs. Also to have your support. I'm lucky that my pain is very short. Was ~ 2 x per day - but since the MRI (and anaphylactic shock to the contrast agent) I've had none. I guess my body has better things to do repairing itself from all that swelling.
Annoying thing was they didn't even need the results of the MRI with contrast! And admitted they didn't know there was any risk. Feels a little crazy to have done better research than the head of neurosurg.
That's terrible Irene, it's bad enough when family and friends look at us funny or make comments but to have your Doctor basically call you a faker or "malingering" is a true insult. Get another doctor that is actually helpful. I have no signs of anything on my MRIs either but I don't imagine my facial pain, why would anyone do that??
So sorry you had to deal with someone who probably would have researched his own symptoms prior to a doctors visit out of frustration and lack of pain management.
No compression does NOT mean no TN.
Unfortunately I’ve had encounters with doctors /specialists like this…it’s not easy.
Keep looking for a doctor who is willing to really listen to what you have to say, honest and supportive.
A top neurologist in my city told me way back in 2002 that I couldn’t possibly have bilateral TN as I was too young (29) and I did not have MS.
I am grateful to this day for my knowledgable GP who kept me on the Tegretol and helped adjust my doses despite this neuro’s suggestion that I was in need of anti-depressants and did NOT have TN…
I would love to send her the link above as well as my medical history, MVD report to show her that all these years later I continue to have TN.
I would send this link to your doctor and move on to find one willing to treat you whether you have a name for it or not.
We need to pull up our bra (boot) straps and advocate for ourselves!
(( hugs )) Mimi
Thanks everyone. I am pleased to see so many doctors recommended on the Doctors Tab. My rude doc is up there - but I'm not naming him. Down the line, if I progress a lot, it might be necessary to find a new one. I can take a lot more pain before going for surgery. Again thanks.