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Old 10-12-2006, 05:50 PM
hmm_md hmm_md is offline
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Question 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.

All my research keeps popping one diagnosis up as a possibility again and again. That is MS. I am really doubtful, but thought I'd throw this out to this forum to see what responses I might get.
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Old 10-13-2006, 11:43 AM
cricket52 cricket52 is offline
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Location: Limboland in northern Canada
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Hi hmm and welcome:

That's a long time to suffer with such an annoying problem.

You have probably researched TN, TMJ, sinus problems, cranial nerves etc.

We can't dx you, but we can offer support. MS tends to cause hyperreflexia or no reflexes, not joint problems. You have really been through the orthopedic mill, a lot of painful stuff has happened to you.

Have you seen a neuro yet? Maybe an ENT who specializes in neuro problems would help, since the problem started with your tongue.

Have you had an MRI? A CAT scan, if it were MS and there were lesions, might not show them.

I don't have a dx of MS, just possible MS. While you are waiting for answers and living with problems life can be very difficult, and your problem must be annoying.

Blessed are the cracked, for it is they who let in the light
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Old 10-14-2006, 09:53 PM
euphoniaa euphoniaa is offline
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Location: dx with MS & HNPP 7/03
Posts: 244

Originally Posted by hmm_md View Post
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.
Hi hmm,

I really don't have any good suggestions about your face problems, but I had to stop in to address the part of your post where you describe your family's nerve traumas. That part sounds a lot like the hereditary peripheral neuropathy (HNPP) that I've been diagnosed with along with MS.

There's not a whole lot of information available about HNPP, but I'm enclosing a couple of links with short descriptions.

In the first one, , they mention how HNPP is often misdiagnosed as Bell's Palsy. When you click on the Bell's Palsy link within it, though, the list of symptoms mirrors the ones that you list.

Here's another good, short HNPP description:

My dad has had the genetic testing for HNPP and 50% of their offspring will have it. While HNPP displays a gene deletion, Charcot-Marie Tooth disease (CMT) has a duplication of the same gene. There are plenty of other peripheral neuropathies besides those two.

I recently found out that one of my cousins was also dx'd with HNPP when he was living in France a few years ago. Although American doctors seem unfamiliar with HNPP, I keep wondering if maybe the ones in France are more receptive to the idea since Doctors Charcot and Marie were French.

I'm sorry to hear you have so many medical issues. Your face problems sound miserable and I hope you can get some relief for those soon. Although MS can manifest itself in almost any way and we all have different combinations of symptoms, you may find it reassuring that your symptoms just don't seem that common with MS.

Good luck to you!
DX with both MS and HNPP (a hereditary peripheral neuropathy) in July of '03, but had probably had MS for at least 30 yrs before that. I've never taken any prescription meds for either MS or MS symptoms (tried LDN for awhile).
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Old 10-16-2006, 05:02 PM
hmm_md hmm_md is offline
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Default very helpful!

Wow, thanks! I will be looking at those links. Interestingly, my sister was tentatively dx'd with Charcot-Marie Tooth before it was retracted and MS entertained. Whatever it is seems to be autosomal dominant.
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