Trigeminal neuropathy

@bcool123
Have you had recent dental work or viral illness? Do you know what triggered this and did you ever have this sensation before? Have you ever had shingles?

You may want to see a neurologist for testing and treatment options if it continues. It sounds like neuropathic itch. I get this on my hands.

Since it is your jaw and cheeks, it could be your trigeminal nerve is irritated. You may want to ask for MRI of head and neck to see if you have a compressed nerve.

I developed itchiness on my calves. No rash that I can see. Oh, what a joy!

No dental work or. Viruses. I saw a neurologist and guess what? He diagnosed me with PN! I’m pretty much done with doctors. I get more hope and support from Connect!! Thank you for your support 👍

@bcool123
I hear you. I really didn’t get too much help from my neurologists. One kept testing me over and over again. For example, I was diagnosed by him with small fiber neuropathy using a skin punch biopsy and my neurologist forgot the diagnosis he gave me and over the next year or two he kept testing me for small fiber neuropathy but wasn’t sure I had it?! He didn’t really offer any good treatment options or guidance. He only prescribed a few medications that made me too drowsy to function at all (I had a demanding job at the time and I’m a single parent of a minor child). I looked up supplements and treatment options and read about taking alpha Lipoic acid and Acetyl l carnitine. I started taking them and the burning in my feet improved. When I told my neurologist I was taking these supplements, he said he had heard they help some patients (then why didn’t he mention them to me as an option)?!

You may still want to see an orthopedic spine specialist and have your cervical spine looked at with cray and MRI. Cervical disc bulges, bone spurs/osteophytes, vertebrae slipping over others can compress the spinal cord and nerve roots and cause all sorts of weird symptoms. When I first went to my neurologist, I had many symptoms like daily headaches, ringing and buzzing in my ears/head (tinnitus), weird facial burning along cheeks/chin/upper lip (like burning mouth syndrome), neck/shoulder pain/tightness/knots, brain fog, bladder control issues and difficulty walking. Later I was finally diagnosed with cervical radiculopathy/myelopathy (5 years later) by an orthopedic spine specialist and he recommended surgery. My spinal cord/nerves/blood vessels was being injured at C5-C6 level which was behind many of my symptoms. I have some permanent spinal cord compression injury due to the delay in diagnosis (shoulder/arm/hand weakness).

I hope you can get some answers on whether you have compressed nerves in your spine that may be behind some of your neurological symptoms.

How did you find your spine specialist?

@celia16
I did multiple keyword searches on the internet looking for spine specialists (orthopedic surgeons and neurosurgeons) that had good ratings and accepted my insurance. There are multiple sites that provide patient reviews of doctors and your insurance may have information about surgeons and ratings. I went through the first 3 without much help and the 4th surgeon (my current one) was the only one who really listened to all of my symptoms, did a thorough exam and checked reflexes/gait/MRI and immediately said I have cervical degenerative myelopathy and recommended surgery asap since my symptoms were worsening and it was at a more advanced state where it would progress and cause permanent loss of bladder control/damage of spinal cord. He was the only one to properly diagnose me in 5 years. I had one doctor make me feel like a hypochondriac and I am so glad I fired her and ignored her dismissing my symptoms and advocated for myself (I almost gave up but something in me told me to try a new spine specialist and so glad I did).

@celia16
I did multiple keyword searches on the internet looking for spine specialists (orthopedic surgeons and neurosurgeons) that had good ratings and accepted my insurance. There are multiple sites that provide patient reviews of doctors and your insurance may have information about surgeons and ratings. I went through the first 3 without much help and the 4th surgeon (my current one) was the only one who really listened to all of my symptoms, did a thorough exam and checked reflexes/gait/MRI and immediately said I have cervical degenerative myelopathy and recommended surgery asap since my symptoms were worsening and it was at a more advanced state where it would progress and cause permanent loss of bladder control/damage of spinal cord. He was the only one to properly diagnose me in 5 years. I had one doctor make me feel like a hypochondriac and I am so glad I fired her and ignored her dismissing my symptoms and advocated for myself (I almost gave up but something in me told me to try a new spine specialist and so glad I did).