Neurologist is a NUT

1

ok so I saw the neurologist. We had a chat. She asked about my pain, the meds I was on. The did some finger to nose exercises, then asked me whether the other doctor had told me what it was I had. I said three different doctors have stated that is was Trigeminal Neuralgia. She sat up straighter looked me straight in the eyes and said that that was impossible I wasn't old enough! I was sent for a nerve test which consisted of sending jolts of electric shock through different areas of my face. OMG painful! She then went to tell me that that test was normal and that it had to do with the nerve further in my head(um would that be the trigeminal nerve?) and is sending me for an MRI. Also blood work for Tegrotol levels because she said that Iwas not on enough Tegrotol I should be on at least 200mg three times a day.

Gloria I am sure you have a comment for this one. I was furious when I left!

2

oh she also didn't even want to see my pain journal said that I wouldn't be seeing her again and I could show that to my doctor at the clinic. grrrrrrr

3

Barb,

Hearing about experiences like this infuriate me. But, I find that people refuse to look at my pain journal too. It is sad to be treated as such a number. I can understand you being furious. The test she was giving you with the "finger to nose", is just a standard way they use to try to discern if you have some major neurologic problem, if I understand correctly, like a tumor or aneurysm going on. My mother, who used to work for a group of Neurosurgeons told me this upon the onset of my illness and walked me through the testing herself over the phone.

But, I am curious what she called the machine she used, or if you remember what it looked like, the one that they used to "send electric jolts" and where they hooked it up. I have not heard of such a practice. I wonder what she was doing. I am sorry you endured so much pain.

I would call her practice, as she is supposed to be working for you (I think some of them forget that you are not there just to put money in their pockets and leave their offices after awhile), and ask for clarification of what nerve it may be further in your head. The brain itself has no feeling, so no nerves . . . what could she possibly be talking about? I'm curious and actually, was not even there, but am currently feeling pain and it makes me livid with this person myself, and I am not even her patient.

My Neuro increased my Tegretol as well (it did not help, but only served to make me dizzy) l, and also corrected me, in her nice, condescending way, when I told her I had a diagnosis of TN, saying in her poor English that I had "Atypical Facial Pain". Well, it falls under that heading, but she did not order an MRI of anything but my brain, she said to rule out M.S.

Of course, I'm sure she also sent you away without any medicine which would do anything for the pain, except for put you to sleep. This kind of treatment is, unprofessional, in my opinion. I find that Neuros know very little about Trigeminal Neuralgia.

Mine didn't even do any tests on the nerves in my face. I think she just knew I was beyond her area of expertise and passed the buck on by referring me to a Head and Face Pain Specialist. Well, I hope this person knows a little more. We shall see.

I am sorry about and can partially relate to your experience.

Hugs,

Stef

4

Oh, that’s not even to mention the “too young to have TN” statement. She needs to look up the definition of the disorder.

5

Barb Sorry you had such a bad experienceThey probly would not want to read my Journal either. dont have one any ways to share . probly a great Idea to have . Finger nose test to see if Neurologic Problem. whish they had one for pain. cause then she, wouldn't had to touch you so much wich does cause pain for some. If you are really un happy go back to your Gp doc Is he the one that gave you the refural. I would call him or her get a differnt refural. At leat she is doing MRI and checking blood level since she want's to Increase Tegrotol wich is one of the med's used in helping Trigeminal Neuralgia . That you cant possibly have cause your to young . Thanks Doc great healt Care You make the Difference!!!

6

A couple of thoughts:

(a) The next time you see the neurologist, inform her that there are documented case reports for TN in children as young as 18 months. Average onset is in the fifth decade, with a preponderance toward women, but physicians are seeing an increasing number of people in their 20s and 30s as the disorder becomes more widely recognized and physician training is improved.

(b) It sounds like the neurologist did what is called a "nerve conduction test". For pain localized to the face, that test might have some usefulness in patients who are believed to have MS. But it's not particularly helpful in diagnosing or assessing facial neuropathic pain of the type you most likely have. And as you've noticed, it's painful. I'm surprised that any doctor would use this test if you first reported that you have trigger zones for light touch initiated pain.

(c) Concerning your dose level on Tegretol, she's probably right. The threshold dose for effectiveness seems to be about 600 mg/day in people who aren't hyper-sensitive to this class of meds.

(d) If she was examining you under a special consult and would not be seeing you again, she's also partially right about not engaging with your pain journal, even if she didn't communicate with you properly on why. The usefulness of such journals is primarily in detecting patterns of pain evolution and situational triggers. To do that well, the reader should be seeing you periodically and interactively. That said, however, she seems to need lessons on patient manner and listening better. My personal preference for getting a doctor's attention on such issues would be to suggest that he/she is behaving like an unfeeling jerk, and should consider going through corrective sensitivity training.

(e) Be aware that although MRI procedures have improved in recent years, many patients who have no indications of nerve compression or arachnoiditis in the MRI imagery, are found to have compressions or lesions when an MVD is performed. The Gold Standard for MRI exam is 1-mm thin-slice MRI with specific weighting factors, post-procedure 3-D reconstruction, and comparison between shots done with and without a contrast agent. Not all MRI centers are equipped or trained to do this variant on MRI. So it's wise to ask them in advance if they are.

Go in Peace and Power

Red

7

Red,

Thank you for replying to Barb's post here.

As usual, I have learned more from your input, as well.

Hope your enjoying your weekend!

Sincerley,

Stef 2.0


Richard A. "Red" Lawhern said:

A couple of thoughts:

(a) The next time you see the neurologist, inform her that there are documented case reports for TN in children as young as 18 months. Average onset is in the fifth decade, with a preponderance toward women, but physicians are seeing an increasing number of people in their 20s and 30s as the disorder becomes more widely recognized and physician training is improved.

(b) It sounds like the neurologist did what is called a "nerve conduction test". For pain localized to the face, that test might have some usefulness in patients who are believed to have MS. But it's not particularly helpful in diagnosing or assessing facial neuropathic pain of the type you most likely have. And as you've noticed, it's painful. I'm surprised that any doctor would use this test if you first reported that you have trigger zones for light touch initiated pain.

(c) Concerning your dose level on Tegretol, she's probably right. The threshold dose for effectiveness seems to be about 600 mg/day in people who aren't hyper-sensitive to this class of meds.

(d) If she was examining you under a special consult and would not be seeing you again, she's also partially right about not engaging with your pain journal, even if she didn't communicate with you properly on why. The usefulness of such journals is primarily in detecting patterns of pain evolution and situational triggers. To do that well, the reader should be seeing you periodically and interactively. That said, however, she seems to need lessons on patient manner and listening better. My personal preference for getting a doctor's attention on such issues would be to suggest that he/she is behaving like an unfeeling jerk, and should consider going through corrective sensitivity training.

(e) Be aware that although MRI procedures have improved in recent years, many patients who have no indications of nerve compression or arachnoiditis in the MRI imagery, are found to have compressions or lesions when an MVD is performed. The Gold Standard for MRI exam is 1-mm thin-slice MRI with specific weighting factors, post-procedure 3-D reconstruction, and comparison between shots done with and without a contrast agent. Not all MRI centers are equipped or trained to do this variant on MRI. So it's wise to ask them in advance if they are.

Go in Peace and Power

Red

8

Barb I was just readindg this again you said you had a nerve Conduction test on your face is that the used for what I had this test done once to my neck year’s ago . Very painful . Red why would they use this test? If any one had one unlikely to forget it very pain ful where nerve pain is. That seem’s so crazey .

9

The nerve conduction test can provide indications of MS, ALS, Parkinsons, certain forms of nerve lesion, and a few other systemic neurological disorders which generate pain in the face and elsewhere in the body. Peripheral neuropathies can also sometimes be confirmed by such means. For a more complete overview, here's something from WebMD: http://www.webmd.com/brain/electromyogram-emg-and-nerve-conduction-studies

Regards, Red


Shirley Warren said:

Barb I was just readindg this again you said you had a nerve Conduction test on your face is that the used for what I had this test done once to my neck year's ago . Very painful . Red why would they use this test? If any one had one unlikely to forget it very pain ful where nerve pain is. That seem's so crazey .
10

Run, don’t walk, run

If your able to get with a good neurosurgeon with experience with TN, that may help

11

You are not alone with difficult Neurlogists, my first visit consisted of a women who said to me that it would not move my case any faster knowing if there was a compression, and in a rude tone followed up by saying "only psychologically, so to bad" I answered, pscyologically is very important to me!

We know depressiona and anxiety can be directly related to anyone have this pain, why is it so that neurologist knowing this can treat people so poorly?

I also agree with the other writers, keep fighting to find someone that will show you the respect you deserve, someone that will listen to you and hear your concerns and fears.

If you feel you do not have someone that can do this, continue sharing with us; your fellow TN survivors. If anyone can understand and provide a listening and supportive ear, we can.

I am in the process of taking a vacation to an understanding neurlogists for surgery, you might have heard of him. Mr K. Meanwhile I do have an appointment with a neurosurgeon here in London, just found out.

I wish you pain free days, days to reflect and journal. Continue writing, and share with your supporters.

12

I had so many people say the same thing to me: "That's impossible, you're too young."

A good response to that is to keep looking for a Neurologist until you find one who listens and will help, even if it is to refer you to someone they know. I had 7 different docs give me 5 different opinions until I found someone really willing to listen.

Stay strong. You can do this!


Kate

13

For others who deal with the same doctor biases as Kate observed: there are at least a few documented TN cases reported in TN-Alert on the TN Association website, that have involved infants as young as 18 months. And there is a trend in recent medical literature reports which may lower the average age at onset from the sixth to the fifth decade.

Regards,

Red

14

A doctor at the hospital actually sent a referal and we called them and they said that they wouldn't see us because we were seeing the other. How the hell do I do this. I need someone who understands how much pain I am in. I mean the one I am seeing says I am too young to have it, but continues to increase my Gaba meds, but doesn't like the narcs I am on, for pain. Although they don't actually take the pain away, if I don't take them I know it.

How can a Neuro who says I can't have it actually precribe and increase anti suizure meds, doesn't she actually think I have and just will not tell me.

I am so confused!

15

Hi Barb,

I know exactly - and I mean exactly what you are going through and how you're feeling with this Neuro! I myself have experienced the EXACT routine from other neuro's I've been to in the past and it is the most infuriating thing!

The other comments you've received are correct - my neuro's also do the finger to nose, check my feet and arms for strength or weakness, I've done 2 of the nerve conduction studies, and yes they do hurt quite a lot and because most Neuro's then say to me, keep taking your meds, you do have TN and thank you for coming, as they then place a hand on my shoulder and escort me out of their office..... These neuro's do not want to continue seeing us as they simply do not know enough about the condition to help maintain our health any better or sometimes less than our GP can.

I am now waiting to get an appointment on Neurologist # 6 ..............

Your neuro is a nut, as in one instance she says you're too young to get it, then tells you your dose of tegretol isn't high enough, so if she believed you could not have tn - why would she bother to check your medication dosages anyway?

However, she did the right things by checking the finger to nose, doing a nerve conduction study was a good idea however painful it is and ordering you an MRI. Those are things I'd expect my Neuro to do at the very LEAST!

That said - I had a good laugh at Red's appropriate comment:

"That said, however, she seems to need lessons on patient manner and listening better. My personal preference for getting a doctor's attention on such issues would be to suggest that he/she is behaving like an unfeeling jerk, and should consider going through corrective sensitivity training."

Sorry, my meds are playing havoc with my head now. My gp put me on a new pain med thats a once daily 24 hour acting medicine and after one single dose already i'm so sleepy all the time - well my eyes are thats for sure. I shall write again later, many hugs to you Barb!

Cheers,

Kerry.

16


Neuro #6? Wow I got a referral to neuro #2 and they refused to see me because I had a MRI scheduled through neuro #1. what pain med did your GP put you on and is it working?

Thanks for you comments

HUGZ BD
Kerry said:

Hi Barb,

I know exactly - and I mean exactly what you are going through and how you're feeling with this Neuro! I myself have experienced the EXACT routine from other neuro's I've been to in the past and it is the most infuriating thing!

The other comments you've received are correct - my neuro's also do the finger to nose, check my feet and arms for strength or weakness, I've done 2 of the nerve conduction studies, and yes they do hurt quite a lot and because most Neuro's then say to me, keep taking your meds, you do have TN and thank you for coming, as they then place a hand on my shoulder and escort me out of their office..... These neuro's do not want to continue seeing us as they simply do not know enough about the condition to help maintain our health any better or sometimes less than our GP can.

I am now waiting to get an appointment on Neurologist # 6 ..............

Your neuro is a nut, as in one instance she says you're too young to get it, then tells you your dose of tegretol isn't high enough, so if she believed you could not have tn - why would she bother to check your medication dosages anyway?

However, she did the right things by checking the finger to nose, doing a nerve conduction study was a good idea however painful it is and ordering you an MRI. Those are things I'd expect my Neuro to do at the very LEAST!

That said - I had a good laugh at Red's appropriate comment:

"That said, however, she seems to need lessons on patient manner and listening better. My personal preference for getting a doctor's attention on such issues would be to suggest that he/she is behaving like an unfeeling jerk, and should consider going through corrective sensitivity training."

Sorry, my meds are playing havoc with my head now. My gp put me on a new pain med thats a once daily 24 hour acting medicine and after one single dose already i'm so sleepy all the time - well my eyes are thats for sure. I shall write again later, many hugs to you Barb!

Cheers,

Kerry.

17

Hey Miss Gloria

Good to see you commenting :)

My neuro sends me to get my teg levels done every two weeks. but I am told that 200mg 3 times a day is as high as my body can take. I have a teg blood level of 43(what ever that means)

My Neuro has stated that I do not have TN just A-Typical Facial Pain because I am too young to have TN so I guess I suffer for the next 27 year, and then she will listen and give me the TN diagnoses(althought she may be dead by then)

I have now seen 6 different doctors and they have all agreed with the TN diagnoses.

My Neuro has now increased my Gaba to 400mg three times a day and 300mg once a day. Along with my Carba 200mg three times a day. I also take 250mg of Neproxin twice a day, gravol when needed. I take oxi 10mg 12 slow release and 10mg of adavan an hour before I go to bed. I can also take Percocet one/two tablets every 4-6 hours, and I have Tylonol #3. But really nothing really works when it starts shooting off and it doesn't stop!

I have now been to the hosptal like 5-6 times. The last time they gave my IV Toradol, gravol, morphine-pushed and then a little more morphine pushes and it seemed to take the edge off and I was able to go home.

Sorry for just writing it all out there for ya Miss Gloria but I am hurting again today, and just needed to write. I really don't want to have to go to the hospital again :(

Hugz

Barb

Gloria E. said:

OMG!!! I concur with Red. I've even seen an episode of "Mystery Diagnosis" that featured a baby that was screaming in pain, saw many doctors, was even accused of screaming for attention and was finally diagnosed when she was a toddler by a smart doctor. When the anti-seizure meds were given the screaming stopped and she turned into a normal little girl.

What I don't understand is if she really believes you don't have it, why the discussion about Tegretol? She's contradicting herself.

I also underwent the nerve test, which also came back normal. However, when the ATN kicked into over-drive and they did an MRI, it showed compression on the trigeminal nerve.

I hope you can find a doctor who knows about TN or at least someone who is willing to do some homework on the subject...especially if they're going to throw a diagnosis by 3 other doctors. She's not a Nut - she's an Idiot!!!

Keep us posted.

Hugs,

Gloria

18

Pain journal? What is the purpose of a journal? I never heard of a pain journal.

Neuros are looking to solve problems with tests and MRIs. They are not taught to read a journals in med school.

19

Jerry,

I don't know about other peoples pain journals, but mine lets who ever reads it know when I took my meds if I ate or drank any thing and when I had pain and where it was located. When meds were added or increased.

It helps to know if something brought it on. What time of day is the worst. When my meds got changed, and if there is a difference since they were added or increased. Stuff like that .

It can be very informative( at least mine can be).

20

Barb, Oh thats what I do, i never referred to it as a journal. Keep a record of what I am doing etc.etc.. THANKS!

Does anyone think they should have some type of bracelet indicating the TN and the meds they are on?