Hi all just got back from neuro apt and was told my diagnosis has been incorrect for 3 years. The specialist believed that even the onset which began with painful bells palsy was psycho- sematic!!! He feels that the pain I experience in my face and occipital nerve are general atypical pains for which he sees no obvious reason for. He prescribed carbamazepine. I said I wasn't keen on more anti seizure but he said if it hurts enough I'l take it!!! I was flabbergasted!!! I cant believe this has taken over my life and this man was suggesting I was just stressed. He asked if there was anything in my home life that would cause this type of pain. He said the mri showed nothing bloods are clear he doesn't know what he is meant to be treating. Not sure what my feeling is really but I need a solution because whatever is causing my chronic pain needs fixing.
Omgoodness!!
This boils my blood!
MRI should be clear, bloods should be normal, these tests are done to rule out other possibilities…,there is NO diagnostic test for TN…
Are you kidding? How dare he?
Please report him and fire him for his condescending attitude and lack of empathy, knowledge of a severe pain condition…
Find thee a new neuro sweetie, I know it’s more time and effort, but you need one to support as well as have an idea what TN is all about…or at least a willingness to learn…
There are good ones out there!
((( hugs ))), Mimi
That is just plan stupid. I can't believe someone who is supposed to know about these things could treat you this way. I would report him and give him a piece of my mind. Many years ago I had a doc tell my wife and I that my 6 year old daughter had Ewings Sarcoma (cancer) in the bone of her left leg. He recommended we go to Texas Childrens, so we did. We saw a bone doc who looked at the bone scan of her legs. He showed us a bowed section of her left leg and stated, "She doesn't have cancer, this is normal."
My wife looked over the scans and asked if that was normal why doesn't she have it on her right leg?"
The doc turned around and looked at her as if she were an ant and said, "I am the doctor here, not you, do not tell me to do my job."
My wife, God bless her, lunged at the doctor. I caught her before she got a hold of him and had to drag her away screaming at him. Long story short, we told the insurance we were never to see that man again and requested another doc. This man was very nice. He took his time and explained everything to us. A few months later he operated on our daughter and removed a tumor from inside the bone of her left leg. Today after a long fight with cancer, my daughter is 23 years old, married, and cancer free. I am so glad we didn't just listen to that butthead.
So, all I can say is screw him, go to another doc. Don't let the world get you down, and know there are many of us here with you in our thoughts...:)
I keep thinking I haven't explained myself properly. I keep thinking that perhaps I shouldn't have mentioned the numbness in my arms and hands he said none of it described anything he had ever heard of. He said tn pain is stabbing and in specific areas and my pain seems more general. Could he be right?!?!?! I feel stupid and like im exaggerating. x
Sounds like you need a new neuro. Get one that has experience with TN. And tell the other a-hole he's fired!
Ok the idiot gave you a med foe seizure but you are crazy?.. I can’t type the words I’m thinkin!
Please email Casey. He knows neurosurgeon and neurologists!
I have Kim just sent an email x
Wow…I thought I was the only one struggling with these unconcerned neurologists!! I am in so much pain that I can’t function and all they are doing is shuffling me from doctor to doctor. Neither wants the responsibility of treating me! The neurosurgeon then tells me after 1 visit that I’m not a candidate for surgery and too continue seeing the neurologist who referred me to him for help!
Hey more, its horrendous huh? I can’t sleep tonight for my anxiety. I’m just losing the plot to be honest. X
more2loooove said:
Wow…I thought I was the only one struggling with these unconcerned neurologists!! I am in so much pain that I can’t function and all they are doing is shuffling me from doctor to doctor. Neither wants the responsibility of treating me! The neurosurgeon then tells me after 1 visit that I’m not a candidate for surgery and too continue seeing the neurologist who referred me to him for help!
Sorry to hear that, it must be even more confusing and frustrating to hear that the last 3 years diagnosis was apparently wrong, or was it?? Many people have been having issues with Dr.'s and specialists lately including myself and it's so frustrating to the point of scary!
What have you been taking? I'm allergic to Tegretol/Carbamazepine and I'm on Gabapentin but I hear the Tegretol is better.
When I had an MRI done from my Neurologist she said that part of the diagnosis is that there is nothing showing on that test, otherwise it would be a diagnose of what ever was found on the MRI, geesh!! Ridiculous what that Dr. said to you!
I had a Dr. G.P. like that and switched to a pretty good one but he moved out of Canada, then the one I have now keeps insisting that my major problem is Fibromyalgia but I don't fully agree that I even have that. I think it's mostly plain old arthritis in other areas but he keeps bugging me to try meds for Fibromyalgia. He never addresses the TN when I explain the pain I've been in. It's like he's obsessed with Fibromyalgia and the meds for that. I'm starting to wonder?!?!?
It can be so confusing for sure!! I hate that, I start to question myself especially when family doesn't take it seriously, like I'm over reacting or something.
I hope you find a good Neurologist!! :)
Take care,
Cheryl
I agree Cheryl. To be truthful when its been a long time and u take regular meds life feels so fuzzy I doubt myself all the time. Maybe I sounded a bit general in my descriptions. I’m just knackered. I’ll take the tegratol and hope a change is as good as a rest!!! X
I am so sorry Helen; NOT what you need to hear. I am constantly amazed by the number of neurologists who are more than willing to make an appointment to see us when they DO NOT have the knowledge/experience to effectively treat TN. And then to say it isn't TN because it isn't the narrow classic symptoms, just nerves?!?!
I hope you can find another doctor who has more experience & understanding. It is hard enough to deal with this disease on a daily basis!
Pam
Helen,
I am so sorry that you are dealing with this!!!! I have been told within the last 2 months the same thing. I went to see a new doctor, hoping for a "fresh look" at my TN and he asked me if I was sure I had TN. REALLY?!?! Why on earth would anyone make this up??? I was calm and clear with him and left his office with as much dignity as I could muster before crying in my car.
I was diagnosed December 2011. I have seen 4 different Neurologists, 2 "regular practice" doctors, 1 dentist, 2 specialty dentists, and an ENT doctor. I have had 3 MRI's, multiple x-rays and now I will be going in for a CT Scan. I understand what you are dealing with and unfortunately for us there are no easy answers.
I had an allergic reaction to Gabapentine so I take Tegritol daily. I have Oxycodone to help numb my pain (although it helps very little). I have pain daily and severe attacks up to 2 times a month. I have changed my diet to drinking nutritional shakes in place of "food", this seems to help the daily pain.
I wish you all the best and I am sending you lots of ((HUGS))!!!!
-Knottytree
I definitely do not eat properly anymore. I sooth myself with soft chocolate which is my main diet! Not good. Hard food can sting in my teeth and makes me really aware of their tenderness. X
I too had a "normal" MRI ~ guess my TN/ATN that I've had the last 6 yrs is "psycho-somatic" as well..........(that is just plain unbelievable).
Let me tell you Helen, as an RN for the past 17yrs & a TN sufferer, the most important thing I've learned is that you MUST be your very best advocate, because no one else will be (i.e. doctors who clearly have not invested any time or effort in your care). I tell my patients to go to every appointment as prepared and confident as you can be. Present them with a current list of meds and dosages you are on (it is surprisingly sad and frustrating how many people do not know this). Let them know what has worked, what hasn't, what side effects you had, & what alternative therapies you've tried. Also, what makes the pain worse (i.e. barometric pressure changes, stress, cold, wind), what makes it better, and so on. Do you have a pain diary? Do you faithfully go to your follow-up appointments? Is the pain getting worse? Maybe I am beating a dead horse and you've done all these things and you've gotten stuck with an arrogant prick who thinks he's god's gift (I've worked with a few of those in my time). Please don't give up or lose faith in Medicine after this embarrassing case of a lazy, self-absorbed doctor who doesn't want to take any more time to research your symptoms or pain . I am blessed beyond words to have found a female neurologist who is also a Pain Med MD whom I trust and who works with me believes me, and doesn't dismiss my concerns. You deserve that as a patient and a human being. Time to find a new doctor. By the way, my TN is on my Right side, and about 3 months ago, I started experiencing numbness/pain/tingling in my right neck that radiates down my right shoulder to my hand (like yours??). Going to the chiropractor tomorrow. Will let know how that turns out. Otherwise, I see my MD Nov. 5th. You are not alone. Your pain is real (not in your head). Please come back to this site (like I do!) to get validation that the pain does exist and we don't need a fancy-pants doctor to tell us it doesn't!
My neuro had me 4 kinds of anti seizure meds one after the other with no help. Went to a neuro surgeon . He didn't do PBCR so he sent me to Dallas I had the surgery and it did away with the Jaw pain but now I have face pain BUT I know several people who have good outcomes with surgery ' I have seen very few who get a good outcome with the anti seizure meds. When I was on one I became weak and my whole body started to shut down yet other who could tolerate did fine We are all not the same. Hope for better results in Nov .
He clearly has no education about TN. TN presents itself differently for most. I know that now because I'm educating myself. I've have ATN for years now and have never experienced the "stabbing shocks" My pain varies, it's constantly in my jaw and gums/teeth but spreads all over, cheek, cheekbone, ear, nose, sinus, temple even scalp sometimes. Bet he'd tell me the same thing. Jerk. You should tell him to educate himself about the broad spectrum of symptoms and pains that can be associated with TN and that in a lot of cases (like mine) finding a definitive cause may not happen. It doesn't mean it's not very real and very painful. That way the next poor soul that seeks his services for help might get a better response. I'm so sorry, my oral surgeon basically did the same thing to me even after I got the diagnosis from my GP. Keep going, find a new doc, don't give up! I just think this is a condition that many docs don't know what to do with and are clueless about the severity of it. It's easier for them to blame your mental state or sleep or stress or exaggeration, I've heard it all over the years. This is wrong. This atrocity is complete ignorance on the neuro's part. Hang in there, don't let this set you back ok.
Helen said:
I keep thinking I haven't explained myself properly. I keep thinking that perhaps I shouldn't have mentioned the numbness in my arms and hands he said none of it described anything he had ever heard of. He said tn pain is stabbing and in specific areas and my pain seems more general. Could he be right?!?!?! I feel stupid and like im exaggerating. x
Yes packer my tn is on my right. I see a physio who says the numbness can be due to a trapped occipital nerve. I suffer with lots of occipital pain. Thanks for yours support x
Oh my.....this is really a crazy thing to have! I have read that it is dubbed "the suicide disease" that in itself should help others to understand to some degree!! I told my family to look it up but their reaction to it tells me that they didn't. Mind you they are better than they used to be. Every fall and through winter mine gets worse, because I live in Calgary that has Chinooks in winter a lot, and with those Chinooks comes lots of wind! I now hate the wind!! I'm just coming out of an attack and it's still windy and I'm supposed to go out shopping and I am not going to go. I'm so afraid of getting a full blown attack and not being at home to nurse it!! :( Not to mention the upped doses of my meds and then pain meds to get through it, I am so off balance and "stoned" good thing I sold my car, couldn't drive more than half the time anyways, lol.
I agree Pam, why do they waste people's time, guess it's about money?!?!?!
Knottytree I can't believe a Dr. would ask if you were sure you had TN!!!! That's like asking....are you sure you have a headache or a tooth ache, etc.!!! It imprisons us...like you said, who would make this shit up!
Best to all,
Cheryl
Knottytree said:
Helen,
I am so sorry that you are dealing with this!!!! I have been told within the last 2 months the same thing. I went to see a new doctor, hoping for a "fresh look" at my TN and he asked me if I was sure I had TN. REALLY?!?! Why on earth would anyone make this up??? I was calm and clear with him and left his office with as much dignity as I could muster before crying in my car.
I was diagnosed December 2011. I have seen 4 different Neurologists, 2 "regular practice" doctors, 1 dentist, 2 specialty dentists, and an ENT doctor. I have had 3 MRI's, multiple x-rays and now I will be going in for a CT Scan. I understand what you are dealing with and unfortunately for us there are no easy answers.
I had an allergic reaction to Gabapentine so I take Tegritol daily. I have Oxycodone to help numb my pain (although it helps very little). I have pain daily and severe attacks up to 2 times a month. I have changed my diet to drinking nutritional shakes in place of "food", this seems to help the daily pain.
I wish you all the best and I am sending you lots of ((HUGS))!!!!
-Knottytree
So sorry you had to deal with an A$$ for a doctor. If you have not already, I would suggest you take the facial pain diagnosis test (online) developed by Dr. Burchiel at OHSU in Oregon. There is a link for it on the Main Page for this website... along with lots of other helpful information about different types of TN pain and finding a good doctor. http://www.livingwithtn.org/
Best of luck & sending healing vibes.