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Old 10-10-2006, 03:30 PM
hmm_md hmm_md is offline
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Default Left sided facial pain/numbness

I just can't figure out which forum would be the best to pose this question. I'm sincerely hoping a bunch of people came over from the old BT since there are few posts to peruse for help as we restart things again.

Here's my situation: about 1 1/2 years ago I woke up one morning and the tip of the left side of my tongue was numb. Odd, but not alarming. My whole family has a tendancy to pinch nerves and I've lost the feeling in fingers and toes for weeks after minor trauma such as using scissors or wearing heels.

By mid-day the numbness progressed to the entire left tongue, my lower left lip, then upper, then cheek and ear and left eye. I was noticing dryness in the left eye and watering in the right (compensating?) as well as what seemed like a little drooling at the left corner of my mouth.

I went straight to an emergency room and with such lovely stroke symptoms was wisked straight back for a head CT. All was completely normal except a very high blood pressure (180/150). Subsequent BP checks have never shown it to be especially high -- maybe anxiety over a presumed stroke?

The numbness continued over the next several weeks so I was referred to a neurologist who found nothing wrong, then to a head and neck specialist who diagnosed me with "sensory-only" Bell's palsey. I have done a bunch of research on Bell's and it seems the consensus is that you can't make the diagnosis without motor paralysis which I do not have. He recommended leaving it be and letting it run its course.

Over the last year and a half it has evolved into a burning pain instead of numbness. The pain waxes and wanes. It seems to be sequential in that at the minimum the tongue hurts and next it's the lips then the cheek and so on. The skin around my left eye feels sunburnt and my left eye is often very dry with profuse tearing from the right. I have begun to notice that when I am especially stressed, emotional, or tired that the symptoms are at their peak and the burning in the tongue extends all the way down the left side of my throat. When I am relaxed it is usually just low level burning sensation in the tongue, always on the left.

Of note, when I went for elective surgery for gastric reflux problems, I awoke from anesthesia with my RIGHT face numb, the lips profoundly so. For about 3 days the right was densly numb more than the left, prompting an MRI and a boatload of blood tests, all normal. The right side resolved after a few days without intervention.

On the advice of Rose, on the old forum, I started taking B-12 supplements at high dose. There seemed to be some improvement but now it's the same as always. I don't know if that was just the usual waxing and waning or if it really helped.

Other issues for me that may or may not have anything to do with this is a presumed diagnosis of benign hypermobile joint syndrome. I have joints that slide around and have had numerous associated orthopedic injuries: 2 torn rotator cuffs, chronic subluxation of right shoulder, 3 surgeries on left ankle for fracture and tendon dislocation, fractured right foot, herniated disc L5-S1. I also have a history of migraines, controlled fairly easily, triggered mostly by hormones.

If anyone has a thought as to what this is or where I should go next I would be most grateful to hear your opinion. At the moment my tongue is on fire and my left face feels like I've been in the sun all day, I have a sore throat, but only on one side. A big part of my job is talking and, although my tongue works just fine, lots of talking seems to make it all worse.
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Old 10-11-2006, 11:05 AM
linniec linniec is offline
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Just guessing
1. Could this be a form of peripheral or other neuropathy?
2. Could it be a left-over from a stroke?
solution--- Contact Rowland on the stroke forum--he is very erudite.
3. Wallenberg's Syndrome: (I noticed that you have broken a lot of bones)--has your balance been off?
Any way, I am no doctor, and you may very well have had extensive tests for all of these. How maddening.


Last edited by linniec; 10-11-2006 at 06:53 PM. Reason: typographical mistake-spelling of the word balance
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Old 10-12-2006, 06:20 PM
hmm_md hmm_md is offline
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Default thanks for the input

Thank you for putting some thought into my problem, Linnie. I did think of peripheral neuropathy, hence the trial of B-12. I have had a real problem my whole life with pinched nerves.

I initially went to the ER thinking I was having a stroke but the CT was negative as was a later MRI when I had the right face numbness. Don't know how sensitive the imaging is for picking up strokes.

I think my injuries are from the loose jointedness, although several physical therapists have commented that my balance is terrible and the last one felt that my proprioception (sense of position in space) was almost non-existant. He thought I compensated with vision, so when he would have me stand on one foot, ok, close my eyes and I'd start to tip over.

I did have an episode in 1988 of viral labrynthitis. I was profoundly dizzy to the point where I couldn't walk or even get off the bed. In fact I was hanging on to the bed for dear life as it kept threatening to pitch me out on the floor. I had nausea, vomiting and severe nystagmus. It lasted about 3 weeks. I just looked up Wallenberg's syndrome. Wow, they sound a lot alike. So now why almost 20 years later is this popping up?
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Old 10-13-2006, 12:19 PM
septemberrein septemberrein is offline
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Check out the Trigeminal Neuralgia board. I don't know alot about it but have read that symptoms can include burning like sensation, electric-shock like pain and sometimes sensory loss. Not sure if it could be one-sided like you have described but doesn't hurt to check it out. GL/HTH

Peace will come when the power of love overcomes the love of power ~~ Jimi Hendrix

DX: Low Free T4 - 5/06, Fibromyalgia - 5/06, Raynaud's - 10/06 |
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Old 10-16-2006, 02:09 AM
uvamomb uvamomb is offline
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Question Trigeminal Neuralgia

Trigeminal Neuralgia is something I would definitely look into. It is usually one sided from what I hear.
I hope you get some answers - sometimes I think that is the hardest part of this whole chronic pain thing is NOT knowing why. I guess there are those of us who will NEVER know why, but, for me it is of the utmost importance. It just feels so futile to treat just pain, doesn't it?
Take good care of yourself - I do know that TN is supposed to be one of the worst pains in the world. I have a good friend who has it.
Let us know what the neurologist says, please.
Hugs and prayers,
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Old 10-23-2006, 10:04 PM
babs babs is offline
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Hi, I have Graves/Hashimoto's thyroid disease and Hashimoto's Encephalopathy. I had a bout of TN very nasty, it's my new 10 on the pain scale, The HE first affected my left side and then my right. I have numbnes on the left side of my mouth, lips and tounge, and have difficulty swallowing and speaking, when I am stressed. Don't know much about the Bell's except my aunt had it several years ago and she definatley had motor paralysis. The HE has caused most of my problems and the prednisone treatment many more. Good luck with a diagnosis, I do believe we respond better when we ahve something to fight.
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Old 10-31-2006, 05:46 AM
bobi bobi is offline
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I would also just like to point out that I am not a doctor either, but reading your original post struck a cord with me as he symptoms you described were very similar, if not exactly the same as my daughter has experienced.

For her it turned out to be low cerebular tonsils, somewhat akin to a chiari type malformation (but in her case due to overdraining of her shunts for hydrocephalus) pressing on her brainstem and hence pressing on some cranial nerves at the base of her head.

I would advise reading up on the symptoms/causes of chiari malformations because there are loads of different possible effects.


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Old 04-16-2008, 09:52 AM
Mrs Wiggens Mrs Wiggens is offline
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Default It never ends.

The very first time I had a lightening strike from TN, I was scared to death. I didn't know if this was a stroke or what. I even thought of calling paramedics, but what would I tell them? I was caught in a panic situation and those with TN know what I'm talking about.
As a result, after two failed MVD's, I ended up in Mayo clinic for three weeks.
This is when they severed the trigeminal nerve, thus making the left side of my face numb. This also created a new pain that I have 24/7. It is not a scarey pain, but a constant pain. It has a name-Anesthesia Delorosa. Now my left side is numb but with pain. I have had a tube put in my left ear and numerous visits to the eye Doctor for dry eye. He did two or three surgeries and now I am doing better. I have had a lot of infections in my ear and my nose. I take twenty some meds a day, all geared toward pain.
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Old 05-15-2008, 10:05 AM
mike111 mike111 is offline
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Default problem2

I didn't heard about this problem.
Can you give more details?
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Old 05-24-2008, 08:53 PM
Nana4&cntn Nana4&cntn is offline
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Welcome to BT! Can you describe your symptoms, there are many causes for having facial numbness/paralysis. It would be easier to help if you could describe what is going on with you.

Take care and Welcome again,
Live your life from your heart. Share from your heart. .....................Melody Beattie

The best thing about the future is that it only comes one day at a time................Abraham Lincoln
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