In 1997 I experienced the first of many episodes of debilitating face pain. I started seeing a neurologist with some regularity, like every other month. He put me through countless blood tests, urinalyses, MRI's, and CT-scans. Every few months he would have a new torture for me. I blindly went right along with it. I needed to have answers to why, or what was causing this pain. After approximately 4 years he told me he had a diagnosis.
Sit down now and hang on for this earth shattering diagnosis of his.......I have....wait for it.....
UNIDENTIFIED FACE PAIN!!!!
Yes, you read that correctly. How do you treat this? With pain meds. Strong ones.
So, I started keeping track of what was happening to me just before an episode came on. I learned how to almost completely avoid getting this face pain.
A couple of years ago I was having an especially bad episode of this pain it went on for about 1 1/2 weeks. I took way more painkillers than anyone should take in a lifetime let alone in a weeks time. I got my son to take me into urgent care one Saturday morning and saw the most magnificent doctor God ever put on this earth. He took one looked at me....and he he had never seen me before and said to me, I will never forget his words, "You have trijeminal neuralgia." OW! The difference those few words made to me. I had thought maybe I was just insane and not feeling the pain.
The best way I can describe the pain is to day it is like having labor pain in your face constantly.
Enter this new pain I have. My arms cramp, which causes my hands to become claw- like looking. It doesn't last for a long period of time but it is happening more often, several times a day. I have tried 3 different types of braces. I have tired several different prescription medications, a few different natural herbs/vitamins. Finally my doctor suggested a trip to, yep you guessed it a neurologist. I groaned when she recommended this, she knows my background.
Monday was my appointment. He did what is called an EMT test. It sends some sort of electric shock through the suspect area. I remember having this done to my face. It hurt like, well, like hell. When the test was complete this so called doctor, this so called specialist in the field of neurology said that I had very minor case of carpal tunnel. His recommendation was to wear a brace. I asked him what if the brace doesn't work, because I had tried 3 of them, then what? His response was a resounding..."I don't know." Then he left the room. I was still seated on this table that was four feet of the floor, he had pushed the easy access stool aside, and I had no other option but to jump down off the table. There wasn't a sink with water to wash my arm. I left his office wondering if it was my destiny to get the really bad neurologists. I now know absolutely nothing more than before I went in to the appointment.
I have a call into my doctor but she in only in the office part time so I don't expect to hear from her until next week. I did tell her of his treatment and his indifference.
Since I saw my doctor, I am having new symptoms in my hands. When my fiingers are cold they become hard and look prunny like they have been in water a while. Also, my index fingers have started to throb. This morning even my finger nails hurt.
I am about to start down the road of self diagnosis again and am not looking forward to the trip.
I am trying hard not to have a pity party this week but it is so darn hard. If I give in and have this party I will be the only attendee because who wants to attend that kind of party. It's my party and I don't even want to be there.
So there is only part of why I am having a rough week. Don't worry this is not an installment story of my woes. I just needed to let loose some up my pent up frustration of medicine in this country.
So, I started keeping track of what was happening to me just before an episode came on. I learned how to almost completely avoid getting this face pain.
A couple of years ago I was having an especially bad episode of this pain it went on for about 1 1/2 weeks. I took way more painkillers than anyone should take in a lifetime let alone in a weeks time. I got my son to take me into urgent care one Saturday morning and saw the most magnificent doctor God ever put on this earth. He took one looked at me....and he he had never seen me before and said to me, I will never forget his words, "You have trijeminal neuralgia." OW! The difference those few words made to me. I had thought maybe I was just insane and not feeling the pain.
The best way I can describe the pain is to day it is like having labor pain in your face constantly.
Enter this new pain I have. My arms cramp, which causes my hands to become claw- like looking. It doesn't last for a long period of time but it is happening more often, several times a day. I have tried 3 different types of braces. I have tired several different prescription medications, a few different natural herbs/vitamins. Finally my doctor suggested a trip to, yep you guessed it a neurologist. I groaned when she recommended this, she knows my background.
Monday was my appointment. He did what is called an EMT test. It sends some sort of electric shock through the suspect area. I remember having this done to my face. It hurt like, well, like hell. When the test was complete this so called doctor, this so called specialist in the field of neurology said that I had very minor case of carpal tunnel. His recommendation was to wear a brace. I asked him what if the brace doesn't work, because I had tried 3 of them, then what? His response was a resounding..."I don't know." Then he left the room. I was still seated on this table that was four feet of the floor, he had pushed the easy access stool aside, and I had no other option but to jump down off the table. There wasn't a sink with water to wash my arm. I left his office wondering if it was my destiny to get the really bad neurologists. I now know absolutely nothing more than before I went in to the appointment.
I have a call into my doctor but she in only in the office part time so I don't expect to hear from her until next week. I did tell her of his treatment and his indifference.
Since I saw my doctor, I am having new symptoms in my hands. When my fiingers are cold they become hard and look prunny like they have been in water a while. Also, my index fingers have started to throb. This morning even my finger nails hurt.
I am about to start down the road of self diagnosis again and am not looking forward to the trip.
I am trying hard not to have a pity party this week but it is so darn hard. If I give in and have this party I will be the only attendee because who wants to attend that kind of party. It's my party and I don't even want to be there.
So there is only part of why I am having a rough week. Don't worry this is not an installment story of my woes. I just needed to let loose some up my pent up frustration of medicine in this country.
Trudy, I am sorry you are having such a rough time. I think all neurologists must have crappy personalities..mine does! Yes, I have one of those, too. Had a cervical fusion back in 2004. Dr.'s personality was crappy, but he did great surgery, and ended years of pain and headaches! Have you tried a rheumatologist? Some of your symptoms sound familiar. A lot of stuff falls into their field...and there are a lot of diseases out there with weird symptoms. Don't give up, keep searching.
ReplyDeleteYes, I know medicine is crappy. It's been on the decline for years...just like a lot of other stuff. My husband's pet peeve is "rude or non-caring" medical professionals. He'll fire someone in a heartbeat over rudeness to a patient. A lot of it is just coming from people in general--nobody gives a shit anymore.
It sucks to be in pain, and not know why. I've been there. At least I know where my pain is coming from now--it's called "no effexor" LOL
Smile...I love ya' Kathy
So sorry to hear about all the pain you are going through! Both literally and dealing with dr's. I really hope you or a decent dr is able to figure out what exactly is wrong and how to resolve it.
ReplyDeleteOMG! You have every right to let loose! You've been through hell! I can't imagine having 'labor'pains in my face! This is awful! You HaVe to find a better doctor! I've had the EMT test to diagnose my carpal tunnel.It was SO painful! Afterwards I told the tech (who hardly spoke english). "I don't know wether to say thank you or Punch YOu RIGhT in the FACE! He looked frightened!(trying to make u smile Trudy!)
ReplyDeleteSometimes self diagnosis..is better than the dribble these insensitive drs dish out
The throbbing in your fingers reminds me of my arthritis.. but the other symptoms are strange. I don't know where u live, but u may need to find an expert in a major city and get to them.
A friends cousin was given 6 mts. to live with the type of brain cancer she has.. well she went to DUke, where they are doing amazing experimental treatments.. She is still here! that original 6 mt. diagnosis? that was 3 years ago! There are answers Trude.. unfortunately it is a battle sometimes to get to them. Hang in there! Thanks for being a loyal blog friend.xox sending u a big hug
I tried to comment yesterday, but it wouldn't let me. I am so sorry about your pain. Can't imagine dealing with such unhelpful diagnsoses, either. I will pray you find a doc who makes it his personal mission to find out what's causing your symptoms and that he or she knows the treatment. You probably do need to visit a teaching hospital where research is their passion. If worse comes to worst, try Hopkins here in Baltimore. They have a world-renowned neurology dept.
ReplyDeleteThanks for visiting my blog. Did you find me thru Home Sanctuary?