Recently diagnosed and terrified

1

I was initially diagnosed with Bell's palsy by two doctors. This has been going on for two months and started with my lips tingling. Before that I just had a sick, bitter and foul taste on the back of my tongue. But I went through a period of profound stresses and several illnesses and then my lips tingled for about a week. My face started feeling numb but I could still scratch it and feel it. It just felt...weird. This was only on the right side. It goes from my jaw hinge down my face, radiates around my jaw and up to the outside corner/half of my right eye. It's like a pressure and sometimes it hurts too. It's not excruciating. I'd give it a 2-3, but the three may just be fear. The numbness is the biggest problem. Sometimes that sensation goes away but I always feel it in my eyebrow and around my eye. I feel like a slab of meat is hanging over my face, something heavy.

My right side of my tongue started going numb and with it a foul taste came over the right side of my tongue from the back forward. I felt like, literally, someone had injected novacaine into my gum behind my last molar. That's exactly what it felt like and I had the senation of the metallic taste I get from novacaine. That is not so frequent. When I think about it my symptoms get worse.

I find out if I have MS on Friday. I had a car accident in September. A few months later my right finger was in agony for a while. I thought I had sprained it or had arthritis. I read that sometimes people who have TN have pain in their index finger. I was stunned. I'm so scared to find out if I have MS. I had a test for migraine numbness that lasted for about 45 minutes to an hour and would come and go, and sometimes go down my arm, for about a month in 2006. My MRI came back negative. I was under the impression that meant I'd never have MS. When I told my neurologist that, he said, so you did not have MS THEN. I got sick to my stomach after my appointment.

I passed the neurological tests, reflexes, eye movements and acuity, etc, just fine. I have gait problems which my regular doctor and I attribute to lamictal which I've been on since 2007 for depression. But I always fall to the right. I can't worry about that though. Lamictal is very bad for walking. My neurologist did not react at all when I stumbled. He told me to take my time. He said I had very good muscle control.

Is this typical sounding TN? Are there other conditions that mimic TN? Is it normal to not have pain like what you are describing? I got so discouraged when I came home; I was happy it was less likely to be MS than TN, and it was presented as an either or thing to me. Soooo, there was that shock. But the term 'suicide disease' took me down so low I can't tell you. And I see it repeated constantly on this site. And it's very discouraging. I have no family and not support network. I am absolutely terrified. I've got no one to lean on.

My doctor said it would take about 6 months to gradually improve. He made it sound like it was no big deal. Perhaps he could sense the stress underneath. He called it Trigeminal neuropathy.

Is Neuropathy curable? Is it different? Please let me know if there are similar problems and what this sounds like to you. Please do not refer to it at all as the suicide disease. That is not helpful to me at all, it is just extremely disturbing.

Thank you all. I wish you all were living pain free.

2

Let's see if we can sort some things out for you, Poppy.

(1) Trigeminal neuralgia is possibly the most severe form of neuropathic pain known to medical practice. However I consider the term "suicide disease" to be an unfortunate over-reaction, and one which I wish the TN Association would stop using. I suspect they picked the term up as a sort of tactic for bludgeoning NIH and other research funding organizations to get real about funding for research. Now it takes on a life of its own that is disproportionate to its real importance. Based on your posting, I may do some sniffing about to encourage its editing from this site.

(2) Pain in your hands or extremities most likely has nothing to do with facial neuropathic pain or TN as such. Pain in both places might be associated with MS, however. So it's prudent to be evaluated for MS. It is common for MS to take some time to resolve sufficiently for its characteristic nerve plaques to be unambiguously visible in MRI imaging. So you may expect to have more than one MRI done, at intervals of a few months to a year.

(3) Either Bells Palsy or Trigeminal Neuralgia can be caused by blunt force trauma or whiplash injury to the head and face. But neither is an "either/or" deal with TN. A small number of face pain patients have trigeminal neuropathy caused by MS plaques. It might be better to call their face pain "symptomatic" TN, given that the pain is certainly in the Trigeminal system but it's not really caused by the same things. You can learn more about the diagnosis and treatment of Bell's Palsy from the following information site: http://www.bellspalsy.ws/treatment.htm . To answer your question, if this is the form of facial neuropathy you're dealing with, then yes, many people are cured of it. And even with other forms of neuropathy, many people find medications which effectively manage the disorder over time.

(4) The present state of diagnostic precision for several disorders which cause facial pain, is abysmal and recognized by many practitioners to be problematic. The term "facial neuropathy" is sufficiently general to be useful as a starting point. Within that overall category there are neuropathies or neuralgias of specific nerves, as well as overlapping disorders like Eagle Syndrome that seem to involve different processes. The facial numbness and achiness you report seem reasonably consistent with Bells Palsy. However it is also possible that you could have an additional form of nerve damage caused by your automobile accident. It may take a few weeks to months to resolve which or how many things are going on. Meantime, I would expect your neurologist to have prescribed something for pain. If so, what was it?

(5) The pain in your arm might have something to do with depression and/or the auto accident. Some depression patients get painful side effects from their meds, and facial numbness can occur in anxiety attacks. You can help your doctor figure out what's happening by keeping a "pain journal" to record when your pain occurs, what you are feeling and have been doing at the time, and how long it takes for the pain to pass, when it does.

We've collected a substantial body of patient experience and medical literature results in the Face Pain Info tab which appears on our page menus (above). I encourage you to spend some time with this tab.

Go in Peace and Power

R. A. "Red" Lawhern, Ph.D

Resident Research Analyst

3

Poppy, try try try to take your mind off of it if you can. The more you focus the more it will bother you. I know this, from personal experience. You are not alone. We are all here if you need to talk. Peace, Min

4

The taste in your mouth may be related to your tonsils. You say your right tonsil is big and red on your other post. When I have had any bleeding in my mouth, it has a metallic taste and that's because of the iron.

Hope you feel better,

Carolina

5

Just wanted to pop in and say we’re with you. You are not alone. I just found this page a few days ago. I was just diagnosed with TN. I didn’t expect to find such a caring, knowledgeable, level headed, sharp, helpful, ‘together’, group of people. This group really has great information on this site. They are very caring people.
Best Regards,
RH