Trigeminal Neuropathy- Bilateral facial hypersthesia and headaches

[absofsteel412]

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'm cross-posting this from the Undiagnosed Symptoms community since it's likely a neurological condition.

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?

In the Undiagnosed Symptoms Community Neurosarcoidosis was suggested, which sounds plausible. I'm just confused because my numbness and paresthesia is bilateral, and for almost all of these neurological conditions the symptoms typically present unilaterally.

Thanks for any help you can offer!

Abby

[absofsteel412]

By nerve discomfort I mean that it feels terrible to have things contact my face. It doesn't hurt, but it feels awful. I don't wear my hair down because just having the hair brush up against it makes me shudder. Washing my face is bad, as is wiping it with a napkin- that might be the worst one. Like I said, it's not pain, but a very strong feeling of discomfort.

I'm definitely not a hypochondriac and I know it's not in my head. I'm off to the ENT tomorrow, I'll check in after that.

I hope you figure out your stuff too! It's never fun not knowing whats wrong with you :/

Abby

[liv11203]

What exactly do you mean by nerve discomfort?

My neurologist said "there is a 95% chance this isn't something serious." But I was not totally reassured by this- I am the world's most extreme hypochondriac. I explained that I have really bad health anxiety and I think he sort of assumed that that is the problem (which it might be) since I am not presenting with unilateral numbness most of the time and because I haven't had any other symptoms. The only thing a little off in my neuro exam was my slightly brisk reflexes- but I've been told that it's not very worrisome if they are equal on both sides (still worried though.) I also had one pupil a little larger than the other and headaches in the eye region for about two days but no vision changes. Praying that this is all harmless.

Hope this all goes well for you and if your doctor mentions anything worth sharing please don't hesitate!!!

[absofsteel412]

Sorry that you're experiencing it too.

Your presentation sounds very different from mine. I have constant hyperesthesia. I have loss of sensation, but when I do touch my face I can feel it, and there's a lot of nerve discomfort, but not pain. I have a lot of paresthesia, aka strange tingling/prickling. It's over almost my entire face, and does not come and go. I have no limb involvement as of yet.

I don't really know that much about neurosarcoidosis... I'll be asking the ENT as well as the Neurologist. What has your doctor said about your issues?

[liv11203]

Me too! Very puzzled by my symptoms that only include numbness. No loss of sensation- it's a very weird feeling (no pins and needles.) It almost feels like areas of very dry skin but that obviously is not the problem. Was happening on my face about a week ago but that has stopped now. (Also no pain) It occurs in my limbs too. It happened for two weeks about two months ago but then completely went away and now is back. Where ever it is though, it comes and goes usually from moment to moment. Is yours always present?

I have heard about neurosarcoidosis and honestly am hoping that that or nothing is the culprit. (Worrying non-stop about the possibility of MS.) My lyme, HIV, and syphilis tests were all negative and my B12 levels are fine. I had a head MRI recently with contrast that was clear according to the radiologist.
Can anybody tell us more about neurosarcoidosis...?