ATN new patient

General General TN & GPN (Old Site)
1

hi there,

I am a new member here and Id like to tell my story.

I am a male, 35 years old and a research engineer by profession. Aside from the medical stuff I am about to discuss i also suffer from anxiety and OCD. (just some background info)

My problems all began about 8 months ago when i started having tingling and numbness in my left hand. After a few days this spread to the right hand and after 2 weeks I was having weakness and tingling in my legs. I was also having bowel problems (couldnt empty my bladder). This was all super scary and i insisted that i had some kind of spine issue thats pressing on my nerves. My orthopedics doctor did an mri and he said the spine is clear and referred me to a neurologist. They did an EMG and a sweat test and they both showed some abnormal stuff. Here are the results:

EMG:

"This electrodiagnostic study is consistent with very mild, multifocal polyradiculopathy involving the cervical C6 and C8, and lumbar L4-S1 myotomes. There is very mild right ulnar mononeuropathy at the elbow by conduction criteria. There is no convincing evidence for a large fiber polyneuropathy. The multifocality suggests a process involving the root entry zone, such as seen in post-infectious conditions."

and sweat test:

"There is evidence for mild, length-dependent small fiber neuropathy with involvement of the sympathetic sudomotor fibers."

Finally the neuro diagnosed my with neuropathy (not really a diagnosis in my opinion). At this point i was convinced I had MS. The neurological symptoms went away and they came back about 2 months later. This time i was having vision problems and really difficulty focusing at work. And my work is very mental so i can easily tell when my mind is not where it should be. Also I was having erectile problems which have never been the case for me (pretty scary for a 35 year old).

These symptoms this time around lasted for a month and then they were gone again. The doctor had given me gabapentin for the tingling and pain in my hands/feet but I never took them because i thought they would interfere with my ability to do my job (Which was really suffering during these flare ups).

Finally i thought that maybe my issues were gone until one day at work i had a really weird electrical sensation in my temple. It was so severe that i got up and walked around to see maybe someone shot me with some kind of tazer! Lol.

This laster for an instant and i ignored it until it happened two days ago, in my right temple. Again I ignored it until I was hiking with my girlfriend a few days later. I noticed a very dull achy pain in my right jaw, deep inside. It felt like TMJ which i thought I used to have so i didnt give it much attention. Well, a few days later i had a flash of the most excruciating pain in my right jaw, and right away i knew this is no TMJ. I saw my dentist/internist and finally neuro. Even though this lancinating pain episode happened twice I pretty much felt the dull achy pain in the right jaw most of the time. I also had it to a lesser degree on the left and sometimes even around my teeth and near my right eye.

It was easy to see the neuro because I had already been seeing her for my prior issues. When i told her about my symptoms she said I have ATN. And i asked if this is independent of my other neurological issues and she said yes! which i think is outrageous because it is so unlikely to have two such uncommon issues and not try to find a common cause here (MS).

I mean, prior neurological issues, bilateral MS, young patient... hello! this is clearly MS. But i couldnt convince her. She did give me a contrast MRI but only of the skull base which said :

"The right superior cerebellar artery courses in close proximity to the superior aspect of the right trigeminal nerve cisternal segment. This finding is consistent with neurovascular compression in the setting of trigeminal neuralgia."

This was all done in Stanford hospital and now I finally got a referral to the UCSF TN clinic and hope they can give me a more convincing answer.

Currently I am not taking any medication except zoloft for anxiety (even though the doctors have given me tegretol and gabapentin). I am weaning off however to consider going on Elavil to see if it can help my ATN (if thats what i have).

The pain has been very disruptive to my work as you can imagine and I feel awful most of the time. I have always had the ability to disengage from my physical pain but there is something odd about this pain. It's as if my mind has connected my anxiety center to this pain and the two of them (the anxiety and the TN pain) are working together to create a magnified effect. When i feel the pain i get anxious and when i get anxious i feel the pain! good times lol.

Also I have to mention that I have had neck issues (pain and soreness) for a long time and been seeing a physio for it, so perhaps this cervicogenic model is true in my case. Also I have OCD and i think i read a discussion post saying how there could be a connection between OCD and TN (this was just a forum post however).

Sorry for the long post folks, please let me know if you have any thoughts and thank you for reading my very verbose post.

H

2

The US TN Association estimates that about five percent of TN cases are "symptomatic" of MS. In a membership of ~7,000 here at Living With TN, at least 30 people have reported that they also have MS (many of whom are no longer active members).

Some of what you describe does sound like reports of MS patients that I have read over the past 20 years. But be advised that particularly in the initial stages, this disorder can be quite difficult to conclusively diagnose and confirm -- even when a physician is actively looking for it. OCD can be a complicating factor, but sometimes for unexpected reasons. Although I've never seen medical evidence for any kind of cause and effect relationship to TN, a diagnosis of this type may prompt some physicians to accord less credibility to your reports of your own symptoms. And some medications used in OCD can cause side effects like parasthesia.

You don't mention whether you have been prescribed medication specifically for ATN. One of the means of confirmation for a diagnosis of TN or ATN can be a positive response to a short course of medication such as Tegretol (for TN) or Amitriptyline (ATN). Has this been attempted?

Be advised that although I'm a well-read layman who has corresponded with thousands of face pain sufferers, I am not a licensed physician. Both by prudent common sense and by site policy, nobody here can authoritatively "diagnose" you, Haach.

Go in Peace and Power

Red Lawhern

3

Anxiety issues, although you don't state how bad, and indeed coupled with cervical issues,are all enough as an answer to all your symptoms, though it doesn't mean they are the cause. MS is a possible.You don't mention your neurological screening tests (outside of specific medical tests), which presumably was done, any anomalies? You don't state whether tingling and pain were in all of the foot/hand or part of them also important.

Symptoms due to sclerosis, would you expect them to come and go? A scar is a scar, unless your body is trying to heal it, but according to the medics doesn't happen.

Tn, ATN whatever is not a diagnosis but a description of symptoms, relieved by tegretol or other antiepileptics means litttle, bit like taking NSAIDS for sciatica and gaining relief, it doesn't tell you what is causing the symptoms.

Was your MRI weight bearing or lying down makes a difference in some causes, that said it should have ruled out serious pathology.

Why do you equate bowel with bladder in your post? Most spinal nerve compression conditions would mean incontinence.

Your contrast MRI conclusion doesn't seem to add up to findings close proximity equates to compression ??

On the note of viral, any evidence of symptoms prior, temperature,malaise etc.

To develop TN bilaterally at the same time due to MS would be rare and unlucky, eh obviously.

Either way you don't supply enough info for anyone to supply more than an informed guess, and as Red states, even if you had, this isn't the place for a diagnosis for obvious reasons.

Either way wishing you well.

4

"Either way you don't supply enough info for anyone to supply more than an informed guess, and as Red states, even if you had, this isn't the place for a diagnosis for obvious reasons."

I was just introducing myself as the forum topic suggests, not looking for a diagnosis. Not sure why you would think I am looking for a diagnosis on a discussion forum even though I mentioned that I am seeing neurologists/orthopedics surgeons/internists at UCSF and Stanford.

Also i have omitted some information because my post is already long enough for an introduction. The full story would take a volume the size of a Russian novel to convey. I am just going through some confusing up and downs and I just included them in my post. This is a very confusing medical condition and not many people have clear answers. So i hope you can forgive me for not writing a detailed/clear enough case report.

Thank you for your thoughtful comments,

H

5

Hi H,

I suffer from atn and anxiety too. I have had it for about 8 years. I have severe pain deep in my ear/jaw area and I also have horrible tinnitus.. I have been incapacitated with it. I no longer even want to leave the house because the pain scares me. Don't be afraid to take the Neurontin. It will help you a little. I have had gamma knife, rhizotomies and in the last 35 days I had a mvd. I actually feel worse. But I am hoping that the nerves will settle down from the surgery. I don't want to spend the rest of my days like this, so I keep trying different things. If you had ms it would clearly show on an mri, because that is exactly what I thought I had too, but I don't. Did you have a dental procedure just before your symptoms started? Many times that can be the cause.

I hope you can get some answers soon

Jackie

6

H,

No offence, or implication meant, 'any thoughts' can be taken as, well any ways, not suggesting you were looking for a diagnosis just saying. ( I call it the dinner party syndrome, convo starts somewhere and ends somewhere else, much more likely on a forum)

Either way like to think you feel better sooner rather than later.

7

My apologies, I used to be a lot more patient before this TN. Now I have become super touchy. I worry about straining my relationships as much as my own health.

Anyways thank you.

H

8

H,

Something that was brought to my attention by someone who's pretty knowledgeable on TN, is your present pharma regime, which you might want to query with your doctor.

According to your symptoms, it could account for a lot. Side effects, withdrawal, not taking them as and when. A good reference point is

http://www.rxlist.com/

9


hi Red and thank you for the insightful response.

I understand the complexities of diagnosing someone with my situation. That is why i am not expecting too much form doctors. One of my best friends whom i have known since we were college kids and chasing after girls in bars is now a physician and he still cant believe this is what I have. He told me he has only seen one case of TN for an elderly patient of his who was in her 90s! So when i cant convince my best friend I think it is really hard to get any real answers from other people. I am hoping the TN clinic at UCSF will give me some answers.

Yes I have been prescribed Tegretol which I still have not taken. The problem with my tn is that its usually a dull aching pain and once in a while it gets to a 10, but then it lasts seconds and so i am not sure how to do the tegretol diagnostic test given the fleeting nature of the pain.

I am going to ask for elavil and see what happens.

H

Richard A. "Red" Lawhern said:

The US TN Association estimates that about five percent of TN cases are "symptomatic" of MS. In a membership of ~7,000 here at Living With TN, at least 30 people have reported that they also have MS (many of whom are no longer active members).

Some of what you describe does sound like reports of MS patients that I have read over the past 20 years. But be advised that particularly in the initial stages, this disorder can be quite difficult to conclusively diagnose and confirm -- even when a physician is actively looking for it. OCD can be a complicating factor, but sometimes for unexpected reasons. Although I've never seen medical evidence for any kind of cause and effect relationship to TN, a diagnosis of this type may prompt some physicians to accord less credibility to your reports of your own symptoms. And some medications used in OCD can cause side effects like parasthesia.

You don't mention whether you have been prescribed medication specifically for ATN. One of the means of confirmation for a diagnosis of TN or ATN can be a positive response to a short course of medication such as Tegretol (for TN) or Amitriptyline (ATN). Has this been attempted?

Be advised that although I'm a well-read layman who has corresponded with thousands of face pain sufferers, I am not a licensed physician. Both by prudent common sense and by site policy, nobody here can authoritatively "diagnose" you, Haach.

Go in Peace and Power

Red Lawhern

10


hi Jackie,

Thank you for the reply.

I am so sorry you are going through this. my pain is also progressively getting worse and I See the day when it might incapacitate me to the same point.

I had no dental procedures (and my pain is mostly bilaterla).

Good luck and i hope you get some relief!

H


littlemoth said:

Hi H,

I suffer from atn and anxiety too. I have had it for about 8 years. I have severe pain deep in my ear/jaw area and I also have horrible tinnitus.. I have been incapacitated with it. I no longer even want to leave the house because the pain scares me. Don't be afraid to take the Neurontin. It will help you a little. I have had gamma knife, rhizotomies and in the last 35 days I had a mvd. I actually feel worse. But I am hoping that the nerves will settle down from the surgery. I don't want to spend the rest of my days like this, so I keep trying different things. If you had ms it would clearly show on an mri, because that is exactly what I thought I had too, but I don't. Did you have a dental procedure just before your symptoms started? Many times that can be the cause.

I hope you can get some answers soon

Jackie

11

Hi aiculsamoth,

I am actually not on anything right now and when the pain started i was also not on anything. My OCD is not that bad. In between the starting point of the TN anda few weeks ago I did try zoloft to cope with the depression caused by the TN but now I am off of it.

Thanks

H


aiculsamoth said:

H,

Something that was brought to my attention by someone who's pretty knowledgeable on TN, is your present pharma regime, which you might want to query with your doctor.

According to your symptoms, it could account for a lot. Side effects, withdrawal, not taking them as and when. A good reference point is

http://www.rxlist.com/

12

Hatch,

I think you might possibly have a couple of things a bit confused. First, as far as I know, there is no conclusive diagnostic test for either form of TN. The diagnosis is made by assessing your patterns of pain. As parts of that assessment, a neurologist might also look for neurological deficits and do MRI to eliminate tumor or AVM as causes.

Your best friend has the same difficulty that other GP's do. TN and ATN are relatively rare disorders, and the mechanisms of neither are fully understood. A lot of GPs will never see a case of classic TN in a 40 year professional career. And ATN is frequently mistaken for TMJ problems. So docs have a hard time understanding what they're seeing, unless they have uncommonly good training after Medical School.

FYI on Tegretol: though it can frequently have an effect in a few days, it is not intended for interventional use against acute pain, or for intermittent use. You'll get better results if you taper up to a theraputic dose and stay with it for at least a period of weeks. If you've been prescribed Tegretol, I strongly recommend that you follow the prescription and report the outcomes to your physician. Elavil might be a next step, if Tegretol isn't effective for you or has too many side effects.

Go in peace and power

Red

haach76 said:


hi Red and thank you for the insightful response.

I understand the complexities of diagnosing someone with my situation. That is why i am not expecting too much form doctors. One of my best friends whom i have known since we were college kids and chasing after girls in bars is now a physician and he still cant believe this is what I have. He told me he has only seen one case of TN for an elderly patient of his who was in her 90s! So when i cant convince my best friend I think it is really hard to get any real answers from other people. I am hoping the TN clinic at UCSF will give me some answers.

Yes I have been prescribed Tegretol which I still have not taken. The problem with my tn is that its usually a dull aching pain and once in a while it gets to a 10, but then it lasts seconds and so i am not sure how to do the tegretol diagnostic test given the fleeting nature of the pain.

I am going to ask for elavil and see what happens.

H