What is the Craziest thing ever said to you by a medical professional about TN?

General General TN & GPN (Old Site)
61

Yes he was a total nut job. I forgot to mention after the appointment I found out he mainly deals with back and neck pain problems, but has no real pratice with neurological complex chronic pain problems and illnesses. I am so glad I looked up the types of surgeries for TN before the appointment and read how serious and risky it is to completely sever the nerve is. It scares me to what could have happened if I let the wacko just crack open my melon and do that; holy cow pie I would be even worse of now. Another gem this weirdo said was,“we’ll your doctors don’t know anything and are idiots.” Really? Because my neuro and GP seem to know a lot more then he did. So glad I ran as fast as could from him.



Sheila W. said:

Kari what a scary guy that Dr is! What if someone trusted him to do brain surgery in his dirty office?? Suure, sounds like he knows all about it. lol. NOT! That's actually exactly what my first TN Dr. told me too, but not to be done in his office. lol.

62

Mangamel

So frustrating that it didn't help your TN, but that's great if you got some improvement in other areas.

Sheila

Mangamel said:

Hey shiela, yes i did have the surgery. I had to do it even though i was told it may change nothing of my pain because it was a 'damage control' type situation. I feel i breathe smell and taste better but i have been left with new and different pain. However, pain caused by chronic infection with fevers, night sweats and a feeling of fullness in my face all lessened considerably. On the tn front no change for the better but regarding other symptoms i suffered it did help yea x
63

I was told, by my Neuro none the less, that I needed to go see a Neuro-psychiatrist because I must be having some kind of “mind body disconnect” because no one could possibly be in as much pain as I say I’m in.
Pain in my left eye only, specifically TN pain, was my presenting MS symptom. It was he driving force that put me in the ER, in the hospital, in the Mayo Clinic, twice and actually led to a positive MS diagnosis.

After suffering and searching for any pain relief, or help by any doctor made me try every medication known to man. I tried every procedure, surgery, application, you name it. I couldn’t (still am) stop searching for pain relief because I know if I did I would not survive. I would not get to raise my daughter, I wouldn’t be there to protect her. I wouldn’t be here for Kellie or my family or my friends or for myself.
Finally after two failed Gamma Knife procedures (I call it mid-evil torture) which caused my AD plus all the pain, I found a doc that put a Peripheral Nerve Stimulator (PNS) plus the right combo of pain medication. I was able to get some relief and started to get some kind of normalcy back, I went in for a checkup with my Neuro. I told him about the PNS and he said “that’s great, pain left untreated can really ruin your life”

Thank You Denver! Don’t forget to tip your waitress…

64

when i explained to my dentist why i had not been in for my regular cleaning, he said, a lot of people "think" they have TN ... it ticked me off so i changed dentist ... same office, just different dentist ... it was in my notes for years that i have TN ... i guess my neuro and the neuro surgeon "thought" i have TN too ...

slightly off topic, i was admitted into hospital for a few days in summer of 2011 ... a doctor came in to see me and started to talk to me ... i was tired and didnt feel like talking so i answered his questions in sign language ... he walked out and asked the nurse if i was on any pain medication and she told him that i hadnt asked for any ... his response was, something isnt right with her then ... he came back in to see me a few days later ... i spoke with him, but before he left the room i signed "thank you" to him and he gave me a weird look ... i thought it was funny

65

I keep thinking how weird it was to go to the Neurologist and tell him my symptoms and have him ask me to wait for a minute, then he came back with a couple of pages copied out of some book and reviewed them with me as he read them, He didn't seem to know anything about facial nerve pain, he just kept reading the pages, looking for something that matched my symptoms, like "this one says numbness, do you have numbness" "this one says tearing in one eye, do you have that", it was very weird. And at the end he said I just don't know it looks like it could be either Atypical facial pain or TN, but since you pain last too long I doubt it's TN but we will just try different medications and see what works...

66

I can’t believe this happened again, and it happened to me the day after I posted this here!

I went to my neuro yesterday and he said the same freaking thing he said to me seven years ago! I guess I should start by saying he did the normal cranial nerve test, asked me questions, noticed I have a walker and that I am currently in the process of getting a power chair and said that he's glad I'm getting one, I certainly need one blah blah blah. Then came the time-warp mumbo-jumbo words:

I think you should go see a neuro psychiatrist so that we can sort out what symptoms are caused by my MS, what are caused by TN, and what are caused by my "mind-body discconect"!

Are you kidding me? I asked him why on earth he would he say that to me ........again? What is my body doing that makes you think I have a.......wait-for-it........."Mind-body-disconnect"?

He said that some of my mobility issues could be caused by something other than MS and other than TN or the two put together. He said that if we can find that out we'll know which is which.

Aside from that being incredibly ridiculous and insane, what does it matter? I tried to think about maybe there is something too that. Maybe I could get some mobility back if it was just in my head. Well of course it’s in my freaking head! Trust me, no one would be happier than me if I could reverse all of this and admit I’m just crazy. I would follow that plan to the ends of the earth to get my life back.

I asked him "Since I have MS and TN, what would be the change in treatment, if any"?

Dr……. Well, I think you should keep taking the Avonex for the MS, keep the nerve stimulator that is IMPLANTED IN MY FACE AND HEAD, (I added this in my head while he was saying the rest...keep taking the heavily sedating pain medications so that I don’t jump off the roof from this pain)...... and get the power chair as planned.

I again asked him why you are saying this to me. Why are doctors telling those of us with MS and TN that we are crazy? Why are you telling us that we need a neuro psychiatrist? Why do we have sit in pain while we go through test after test after test? You think we are making progress by more tests and we're still in pain from the "Suicide Disease" that keeps taking our friends lives day after day after day!

He then said, when you were at the Mayo clinic, they gave you a psych written test which said, based on my oral interviews and ability to understand what was going on around me, my test scores were very low and they were shocked at my "IQ level was lower than they expected".

What a surprise? I am being stabbed in the face and the eye ball thousands of times per second while you are telling me this and the same thing was happening when they made me sit through a 4 hour written test. I asked him, if you were to try and take that test while someone was stabbing you in the eye relentlessly, ruthlessly would you score high on an IQ test?

Are you kidding me? In my life before MS and TN I was a highly sought out contractor that went into large telco companies and designed software systems that store and displayed content on their websites. I designed entire systems with tons of people reporting to me to execute the design! I am in no way saying that I'm too smart for their test, I don’t think I was even the smartest person on my team by a longshot, but I am logical, I am a problem solver and what he is saying to me does not make sense and more importantly,........IT DOESNT SOLVE MY PROBLEM!

Ok, I'm going to go chill out with my mind-body-disconnect and see if it makes sense to her!

Thanks for listening


MSandTN said:

I was told, by my Neuro none the less, that I needed to go see a Neuro-psychiatrist because I must be having some kind of "mind body disconnect" because no one could possibly be in as much pain as I say I'm in.
Pain in my left eye only, specifically TN pain, was my presenting MS symptom. It was he driving force that put me in the ER, in the hospital, in the Mayo Clinic, twice and actually led to a positive MS diagnosis.

After suffering and searching for any pain relief, or help by any doctor made me try every medication known to man. I tried every procedure, surgery, application, you name it. I couldn't (still am) stop searching for pain relief because I know if I did I would not survive. I would not get to raise my daughter, I wouldn't be there to protect her. I wouldn't be here for Kellie or my family or my friends or for myself.
Finally after two failed Gamma Knife procedures (I call it mid-evil torture) which caused my AD plus all the pain, I found a doc that put a Peripheral Nerve Stimulator (PNS) plus the right combo of pain medication. I was able to get some relief and started to get some kind of normalcy back, I went in for a checkup with my Neuro. I told him about the PNS and he said "that's great, pain left untreated can really ruin your life"

Thank You Denver! Don't forget to tip your waitress.....
67

omgosh what a freak. To be honest when i read stories like these, its almost like the dr is treating you like a little child recieving reverse psychology for pretending to be sick to get off school, you know what i mean? They say the most ridiculous things like we will just 'snap out of it' and say, 'actually..no no, im not in THAT bad pain its ok,,,,'

I have heard similar stories to this..where doctors will come out with something really outlandish and look you dead serious in the eye like, 'well if its THAT bad, if your really THIS ill, then you must go through with a surgfery its your ONLY option..is the pain THAT bad?' argh, angering!!

Kari said:

This last week from my GP (whom I love as a doctor). "Yeah you are walking really bizarrely. I think it's neurologically." Not the answer I wanted to hear nor was "I don't think it's gonna just walk its self or walk out the door; I think we're looking another problem here". This last answer was him helping me not to just break down in a little puddle. The appointment was over my difficulty walking as of late and not TN related but I had to share.

On the tn side of things though here's one for you all. This was from the first pain managment doctor I saw last year. "Oh yeah I see TN all the time, everybody has it. All we need to do is go in you head and cut the nerve off completely, then you be fixed. We can do it in my office." Considering his office did not have a surgery room was clue of crazy doctor, clue two was everyone has tn, and there were other clues. I just walked away and did not go back. Honestly I think he just wanted me as patient so he could add TN to list of diseases he has treated.
68

I HAD THIS HAPPEN. my neuro is lovely but very young, he googled my symtoms, after i told him other doctors had mentioned i may have tn -_- he thought i had some rare disease where only one eye waters or something.. i know thats how i research but come on, you expect peopel to read patient referrals the night before SURELY, just to brush up on the particulars of possible said illness...!!

twinmommy said:

I keep thinking how weird it was to go to the Neurologist and tell him my symptoms and have him ask me to wait for a minute, then he came back with a couple of pages copied out of some book and reviewed them with me as he read them, He didn't seem to know anything about facial nerve pain, he just kept reading the pages, looking for something that matched my symptoms, like "this one says numbness, do you have numbness" "this one says tearing in one eye, do you have that", it was very weird. And at the end he said I just don't know it looks like it could be either Atypical facial pain or TN, but since you pain last too long I doubt it's TN but we will just try different medications and see what works...

69

WOW!!!

ihold said:

"Are you looking for attention? Maybe you need to see a psychiatrist." "You're ruining your husband's life." That last one really hurt.
70

My Dr. said if my oxygen is low, I should just take a deep breath. So I bet he thinks anyone on oxygen just doesn't breathe deeply enough. So amazing that these people are supposed to know about health problems.