Undiagnosed Symptoms Community
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12100272 tn?1423540919

trigeminal neuropathy- bilateral facial hyperesthesia and headaches

Hello! I've been experiencing symptoms for over a month now. I'm scheduled to see a Neurologist this month, but would love some input from anyone before then.

I've experienced ear fullness and popping for over two years, but I don't know if that's connected to my current symptoms.

At the beginning of January I noticed a small spot of numbness on the right side of my nose. Over the next weeks that spread to the bottom half of my entire face, left and right. My corneal reflex was unaffected, and only the mandibular and maxillary branches of the trigeminal nerve were impacted. Within just the past few days it has begun to spread to the area above my eye on the right side, leading me to believe that now the top branch of the nerve is being affected.

The numbness is not complete anesthesia, and there isn't pain, but there is a loss of sensation and discomfort when the affected areas are touched. It has also impacted the inside of my mouth- roof of mouth, gums, teeth, and anterior portion of tongue.

In addition, I have been experiencing some ear/jaw pain, and almost constant headaches, which are particularly bad when I wake up, and in the morning. The headaches range from throbbing, to a feeling of pressure. My scalp is tender to the touch. I have feelings of being more clumsy and having more difficulty speaking or recalling words, etc, but that could easily just be "in my head" so to speak. Plus, it is harder to speak and eat now that my mouth feels like it's 5 times larger than usual.

I had an MRI which supposedly came back clear, but I will be getting the films sent to me in order to show them to the neurologist. I look completely normal, and I have no paralysis or loss of function.

People keep telling me about what they think it is, such as Vitamin B12 deficiency, thyroid problems, Vitamin D deficiency, Lyme disease, etc, but I don't have any of the other symptoms that those things cause.

Has anyone else experienced something like this, or have any idea what it could be?
3 Responses
1530171 tn?1448129593
Hi absofsteel412.

I see you've done a lot of "homework" on this.
It's great that you posted here and one thing I have concluded over the years is that proactive patients make the best patients (on the average) with better outcomes, compared to not proactive patients.

Hmm, it's likely going to  be a diagnosis of exclusion.
After reading your post twice, the only educated suspicion I could make after running the list of differential diagnosis in my head -according to your symptoms- is Neurosarcoidosis.

Neurosarcoidosis does not have any characteristic findings on any imaging that can lead directly to a firm diagnosis and there are no definite diagnostic criteria, so as I mentioned at first, it's a diagnosis of exclusion.

Neurosarcoidosis can range from very mild to life threatening and it looks
(if indeed you are diagnosed with Neurosarcoidosis ) like a very mild form of it in your case.
You may want to look Neurosarcoidosis up and if you require more details, or have any questions, let me know.

In the absence of distinct and intense pain, trigeminal neurpopathy is out .  The presentation also does not fit the profile for MS,Temporomandibular joint dysfunction, Lyme's disease, Bells Palsy, at the present time, as your symptoms are not consistent with the typical symptoms of these conditions, however they cannot be ruled out entirely, since there are many variants
of these that can mimic many other conditions.
Lyme disease for example is known as the great pretender, as it can mimic any condition imaginable, with one of the widest symptomology.

Please note that my comments and suggestions are not intended to replace medical advice.

best wishes.

12100272 tn?1423540919
Thank you so much for your response!

I had also ruled out Trigeminal Neuralgia, but every time I google my symptoms it comes up :)

Some people tell me to stop looking on the internet and trying to diagnose myself, but I don't see the harm in having as much information as possible.

It looks like Neurosarcoidosis typically accompanies the disease affecting other organs, but it can sometimes present first in the brain. It really ***** that neurological conditions can be so difficult to diagnose. Honestly, until these problems started I had no idea how many people are out there suffering from undiagnosed chronic conditions.

I'm seeing an ENT on Wednesday for the ear fullness/ear pain, and I still have no idea if the two issues are connected, but I guess I'll just have to wait and see. It's just so nice to hear from someone who has some experience with these things.

One thing that seems different about my symptoms is that it's bilateral. It seems so unlikely, because that would mean that the same thing is happening to the nerves on both sides at the same time. Or in the brain I guess. In almost everything I've read, no matter what the disorder, symptoms typically present unilaterally. The way it spread was strange too; it went from my nose all the way down to my chin on only one side, and then spread over to the other side of my chin and back up to my eye on the other side.

Anyway, I guess there's nothing else I can really do for now, but I do appreciate hearing from you and learning about something that I had never come across. It does sound like it could be a possibility.

Thanks :)

1530171 tn?1448129593
You're welcome Abby.

It is possible that the pons part of the brainstem could be involved (the trigeminal and facial nerves emerge from the pons), which relays information through its nuclei that have to do with:  hearing,taste, eye movement, facial expressions, facial sensation ( all these pertinent to you) among many other functions.
Any abnormality in that region of the brain would likely affect the originating nerves in a bilateral fashion.
The challenge is to pinpoint the exact location, extend and cause relating to the pathologies in this disease process ,due to the difficulty of obtaining nerve tissue for proper evaluation.
I'm afraid that there have not been many long term studies in this area to be able to discern more useful findings from them.

A Neurotologist (combined Neurologist & ENT or Otologist) would be the specialist to see for this condition, ideally. But again we don't live in an ideal world.

Wishing you well.

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