First of all, keep in mind that I am unable to diagnose you because I am unable to examine you, this forum is for educational purposes.
The symptoms that you describe are non-specific for any single disorder, but I would recommend some more testing. People who hyperventilate can get tingling around the mouth, and in the fingers/toes. Electrolyte imbalance (particularly calcium) can also cause similar symptoms. One of the most common instances that I see this problem is in medication side effects. Many medications can cause this pattern of numbness with Topamax and Diamox being the most common. Multiple sclerosis (MS) also has to be considered since you have had episodes of numbness/tingling in the past. I would suggest that you have a repeat MRI of the brain with contrast and an MRI of the cervical spine with contrast as well to examine for signs of MS. More rarely a stroke in the thalamus region of the brain (usually due to high blood pressure and/or diabetes) can also cause similar symptoms (which would also show up on the MRI). I would also suggest some blood work including CBC,CMP, ionized calcium, lyme antibodies, B12, ANA and ESR.
I hope this has been helpful.
Hi again. I posted the original question. I hope you don't mind my asking, but when you hear things like this, how often, in ballpark percentages, is it 1.) a brain tumor; 2.) MS; 3.) unexplained?
Thank you again.
Get to a neurologist and an ENT who is also preferably a Craniofacial Plastic Surgeon right away... find one at a trauma center.
This same thing happened to me.... It is probably related to something kicking off your trigeminal nerve. My numbness started in my mouth and progress to the entire left side of my face.
At about age 36, after the numbness with SEVERE pain, so painful it would knock me on my back nearly everyday and especially when the weather changed. My ENT (not a craniofacial surgeon) at the time thought it was my teeth had me root canal 10 teeth (at about a grand a peice). This still did not releive the pain. No one would restore them b/c of pain so I had to have them all pulled after a year.
The pain had spread to the entire left side of my face and left eye - all along the route of the trigeminal nerve. I couldn't find anyone to help and so ended up in pain management - and still am on oxycodone from over a year and a half ago.
After traveling to many regular ENT's, I took my CT scans to University of Maryland Shock Trauma Division of Plastic Surgery. It was kind of a miracle I found out this is who might be able to help - a cashier's mother at the grocery store worked for the Chief of this division and I just happened to mention it after he commented on my teeth.
Anyway, They said that all of my sinuses showed bone overgrowth completely encasing the sinuses. And surely yes he beleived me about the pain - finally! So I had surgery at Johns Hopkins (don't recommend outpatient surgery there the anesthioligst was terrible) Anyway my pain changed changed/improved but is not totally gone. We did another CT and it shows I may need antoher surgery on my ethomoid sinus to open it up....but at least I have a plan now.
I don't know if I will ever be able to get implants for the missing teeth. I may be condenmed to dentures at 39.
This may not happen to you - everyone is different.. But like you I did not know the numbness would end up being the harbinger for the suffering that followed.
Don't mess with your teeth until you see the craniofacial surgeon. If you mention trigeminal nerve to an oral surgeon they will not touch you to restore any missing teeth.
Also, more than likely the neurologist will try all kinds of drugs like SSRI's SNRI's Tri-cyclic anti-depressants like amitryptaline.
These will affect the nerve symptoms, but if there is something physical like the swelling or infection triggering this, the underlying problem is not treated and could end up being serious.
Get also to a pain management doc..for a second opinion. They are similar to neurologist but are a little more open minded and can think beyond just the electrical system of the nerves.
You will want to try to stop whatever is causing this right away... if it progresses to chronic pain there is a chance that the nerve will just turn ON all the time forever. And you do not want that to happen.
Don't just accept from the neurologist that you have trigeminal neuralgia - for which if it gets very bad the only treatment is a lifetime of narcotics.
I was diagnosed with this - and it turns out it was the sinus swelling, bone overgrowth and inability to equalize pressure... so sometimes there are other explanations... rather than the obvious diagnois of just saying your nerve hurts...(trigminal neuralgia)
Trigeminal nerualgia is a bucket diagnosis that does not explain the origin of the pain/ loss of sensation. It is known as one of the most painful conditions known to mankind.
There is a lot more to the story, including finding a rare and dangerous fungal infection in my sinuses, but this is the main gist of it. Feel free to contact me.
They will do a CT and an MRI right away to rule that out.
Thank you so much for your reply.
I just wanted to mention that I did not have a major stress right before this happened, as you said. (I just said I was doing a lot of sledding in the cold.)
You might want to get your B-12 checked. That was the symptom I had ( Intermittent facial numbness that started in my lips & in certain areas of my face) I was referred to a neurologist who found my B-12 level to be very low.
Good Luck, Jean