It's not ATN after all!

After almost 4 years of thinking I had Type 2 TN, I have now received a diagnosis of MS from my neurologist. I initially suspected that I had Burning Mouth Syndrome because I had continuous pain along the left mandible but on the gums on the inside of my mouth. This began first thing in the morning, every morning, with a bit of tingling, then worsened to burning, then stinging, then to a kind of pain I can’t even describe. Trying to find some condition that matched my symptoms, I stumbled across TN. But I knew right away I did not have Type 1 because I never experienced the electrical shock sensation on my face. The pain was only inside my mouth. I began to feel this pain shortly after a root canal on #19. I returned to my general dentist, who could find nothing wrong with the tooth. I then tried a university professor of dentistry who deals in only “exotic” cases. He recommended that I see an endodontist to rule out the possibly obvious problem with the root canal itself. The endo then performed a second root canal on the same tooth. After getting no relief from that procedure, my PCP referred me to a neurologist (Neuro #1). He started prescribing drugs right away, none of which worked. I kept checking this forum to see what drugs were working for others and each time I visited him, I mentioned whatever drug I read had worked for someone on the forum and he prescribed that drug. This went on for six months with no improvement. He finally referred me to an oral surgeon who, you guessed it, extracted the tooth. He told me that the tooth was in fact abscessed and cracked, but he didn’t like it at all when I asked to keep the tooth. Later when I examined it under magnification, there was no evidence of a crack and I doubt there was any abscess either. After doing a bit more research and receiving recommendations from two sources, I went to see a university professor of neurology (Neuro #2). He is extraordinarily thorough and has access to the latest and greatest equipment for testing. So I have had a sleep study, extensive blood work, brain and neck MRI’s, and am now scheduled for Evoked Potential tests of eyes and ears as well as a lumbar puncture. He’s 90% sure at this point, but he expects the LP to confirm MS 100%. As an aside, the neck MRI showed disk compression between C3, C4, C5, & C6. I had attributed the constant pain and limited range of movement in my neck to job stress. I visited an orthopaedist several years ago who told me it was arthritis and ordered some worthless PT. It now turns out that that pain is emanating from damage caused by a whiplash injury over 10 years ago…a story for another day and another forum. Now Neuro #2 has assured me that I do not have TN. The MS diagnosis has come as quite a shock. According to Neuro #2, he has never seen a case like mine in 30 years of practice. He half-jokingly told me that if he got 4 or 5 more patients like me, he could write a paper and be published. So the upshot of this very long tale is that I didn’t give up looking for the cause of my pain. My options were limited to suck it up or keep trying to find the right help. Now that I know what I’m dealing with, I can move forward. I have also suffered from Major Depressive Disorder.for over 30 years. That coupled with the relentless pain resulted in feelings of hopelessness. I haven’t been on this forum for quite some time because I’ve been busy on a mission to get some relief from the chronic pain and depression which together were ruining my quality of life. I hope my story will encourage others with “mysterious symptoms” to be tenacious in their search for help. Don’t give up. And remember: you, the patient, are your best advocate.

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Sorry you had to go thru so much. I was living with TN for quite awhile .It started out where I could live with it
Then it exploded . And I ran to my dentist. And luckily he said nothing is wrong with your teeth . He said go see a neuro. The Neuro. Said it could be two things . TN or MS. It was both he right away put me on Carbarzepine and I have been able to control the TN up to now for ten years. I am now at 1200mg for three weeks. Hoping I will be able to step back down to 900mg.

Glad to hear you are doing better. The 200mg of carbamazepine I am on
currently is having no effect whatsoever, but it is encouraging to know a
higher dose may provide some relief further down the line. Thanks for the
feedback.

Hi Susie Q. Your story really touched me. I wonder if the “just suck it up” attitude I carry with me is the most appropriate. I cannot take any medications due to poor tolerance of side effects. I have had MRI which shows compression on the left side. They saw no evidence of MS. Did that happen with you? I also had 2 root canals in the same tooth. The dentist thought there might be a crack. I chose not to have it removed as I was concerned it was not a dental issue after all. I was inspired to advocate for myself more to see what the issue really is. I have been diagnosed with ATN on the left, chronic migraine, left side, and I feel there is a relationship. Thank you for sharing your story with the forum.
Camia

Hi, Camia. First, let me say that I am sorry that you have chronic pain.
No one can know how bad it is until they experience it themselves, so we
must look for some support from the similarly afflicted in addition that
provided by friends and loved ones. Secondly, kudos to you for deciding to
become your own advocate. After trying the “just suck it up” approach
(which seems to be a part of my genetic makeup), I knew that I couldn’t go
on until I had tried everything I could think of to get some relief. Your
determination to be your own advocate - and I say “determination” because
it is more than simply a “decision” - will require tenacity, which can only
help you, IMHO. Pain is a great motivator. The problem with chronic,
debilitating pain is that sometimes you are just hurting too much to help
yourself. That feeling of helpless will NOT last. As soon as your pain
relents, you must get back to your mission. Don’t be deterred by setbacks.

Unfortunately, most of us haven’t gone to medical school. It is difficult
to know which kind of specialist to approach. Many, many medical
professionals don’t know a thing about TN, or worse yet (at least for me
personally), acted as if they did when the opposite was true. I’ve found
that some docs are put off by patients who have done the research to ask
informed questions. Best thing to do is get the heck away from them asap.

It’s good that you have a diagnosis. Once you have that, it is a matter of
planning the next step for treatment (and hopefully, some relief) with your
docs - which is where I am presently.

To answer your question, the brain MRIs I had were what convinced the neuro
that I did NOT have ATN. From what you describe, it may be helpful to read
some of the posts regarding MVD, nerve blocks, and other procedures for
addressing compression. There is a LOT of info on HW. You should also
check out the website moderated by Red Lawhern at ■■■■■■■■■■■■■■■■■■■■■. He
provides info on the latest legislation regarding chronic pain management
medications, as well as “Spots of Light,” a series of photos which are
uplifting.

Despite the side effects of the meds you have tried, there may be something
out there that is non-traditional in nature. There are several kinds,
which I have not personally pursued - accupuncture, for example. I would
never recommend something I haven’t tried myself, so please don’t take that
as an endorsement. I’m just suggesting other pain-relief options you might
want to investigate.

I hope you do get some effective relief soon (like yesterday)! Keep
looking and stay in touch on HW. This website is a tremendous source for
information and experiences.

:heart: & :sunflower:
Sue

Thanks again, Susie. I’ll keep searching. Take care of yourself. Yes let’s
keep in touch.

Certainly! Let me know how you are doing.

Sue

One thing I got really frustrated with dealing with the medical community was the obsession of having a clear label.

For me I found if doctors didn’t have a clear diagnosis, it’s like they would take a hands off approach to the illness.

I was a lot more interested in practical things. Whether it’s burning mouth, ATN, glosopharyngeal neuralgia, what matters is the pain exists. Chronic pain for me qualifies as an illness in itself. It’s cool your doctor tried to look for solutions prior to having a concrete diagnosis.

I hope with a more accurate diagnosis, the solutions will be more forthcoming and effective.

You too Susie

Thanks, Kupain. I think you are spot on about the clear diagnosis issue
with doctors. It seems that if they can’t define what is wrong and, more
importantly, can’t find a way to relieve your pain, they DO take the
hands-off approach. In my case, they just passed me on to another
specialist UNTIL I took charge myself. Our/my tendency is to look to
doctors for all of the answers and take their word as gospel. That might
have worked for past generations, but things are very different now.
Patients can become informed through their own efforts, and thank God we
can.

I agree, chronic pain is absolutely a real illness in itself. Like you, I
don’t care what they call what’s wrong with me, just tell me what to do to
get some relief from this pain!

Thanks for sharing your experience. I only wish I could be as succinct as
you are.

Suzy,
I’m curious how exactly they came to the MS diagnosis. Did they find lesions on your MRI?

The report from the MRI states “extensive deep white matter disease.” Neuro says he is 90% sure it is MS based on that. I had a lumbar puncture since then. Neuro says he will know 100% when he sees the LP report. I will learn result of LP on Fri, Oct 14. My understanding is that white matter = lesions.

Wow, that’s such an unusual presentation of MS- the way everything played out for you. But yes, white matter lesions can= MS, but not always. Sorry about everything you are going through.

Hi there - I tried the link to the website you mentioned, but it turned out to be an e-mail address. Do you know the name of the Website Red moderates?

Thanks.