Can anyone relate to my experiences?

Hey everyone,

Hope everyone is doing well today! I recently found this site, thank god, because I was frantically searching through the internet to find reassurance that I DON"T have TN and MS, but all I come up with is numbers and statistics. Anyways, I wanted to see if anyone else has experienced what I experience. I will try to be as short and to the point as possible.

Weird stuff begins 2006

1. My hair becomes sensitive to the touch in one particular area. It didn't hurt, but it felt uncomfortable if it touched it. This sensation comes and goes... I usually dont even notice it.

2. Nothing happens until 2011

2011 (It really begins)

1. Early in the year my jaw starts to hurt. It's very dull pain on my left side, and I mad a self-diagnosis of TMJ. I did facial work outs and I thought they seemed to help. The pain lasted maybe 3 weeks and then was gone.

2. I'm in houston for work (I live in Illinois) and my index finger starts to hurt when I move it. I actually thought it was arthritis. I didn't really look into it and then 3-4 weeks later...

3. May 2011, I come back from a festival, where I regret to inform, I did some MDMA which made me grind my teeth. I already tend to grind my teeth when I sleep so this doesn't help. The day I come back, out of the blue, extreme jaw pain engulfs my entire being. Grinding didn't seem to justify the pain.

4. Dentist, ENT all rule out TMJ and my MRI scans come back negative on my lower back and brain/face. The neurologist's impression was that I had Mild left antral inflammatory sinus disease, which google doesn't even know what it is. I never did a follow up with him -I wish I did- because I moved and the pain went away completely after about 2 weeks. But, still I just can't believe it was something so simple. I mean, it hurt so bad I didn't sleep or eat from days at a time. I can't say it was electrical pain or burning pain, becase it just hurt and the pain would radiate down into my chest.

5. Also, during this time my left big toe was partially numb and tingled. It went away maybe 2-3 weeks after the jaw pain subsided. Also, the jaw pain seemed to have gone away after one week and then BAM it hit me again the very next day, not as strong though.

6. I don't know when this began, but I started noticing my eyes would feel really weird if they went to a certain angle or I stared at lines... Doesn't happen often.Maybe I'm just paranoid and this is all psychosomatic.

7. Since, this has happened I've had anxiety attacks, I think, and have become very worrisome. Whenever I really stress about it, I can feel my left jaw spasming, but no pain.

Anyways, I'm fine now and right now I'm just worried that the pain will come back and then I'll have to do more testing followed by the inevitable diagnosis of MS and TN.

My main questions are this:

1. Has anyone experienced this?

2. Am I paranoid to think I might have MS?

3. I know TN can be the first thing experienced with an MS attack, but wouldn't that mean my MRI results would be positive (assuming i did have it), because wouldn't MS show scaring around the TN part of the brain?

4. What else could this be?

5. Anything else you think I should ask?

I know, I'm paranoid, but I also can't imagine that pain coming back. I couldn't work at all for those 2 weeks (I took my two weeks vacation for this pain). Any help would be greatly appreciated and I wish all of you the best!

I've been talking with face pain patients for over 16 years as a patient advocate. But... I'm not an MD, so keep that in mind as you read further.

1. The initial presentation of your pain has elements in common with Trigeminal Neuralgia. But there are elements of the pain that don't fit that diagnosis too, particularly in your extremities.

2. Pain in your arms or legs is not TN, but could come from a common systemic source that also affects the trigeminal nerve distribution. I would suggest that you be worked up by a neurologist to evaluate for MS, Fibromyalgia, Lupus Systematosis, and Lyme Disease -- all of which can have symptoms distributed as you relate. In the event that you have a disorder other than TN but are experiencing pain in the trigeminal distribution, it might be said that you have "symptomatic trigeminal pain", not TN.

3. You're not paranoid, just justifiably worried and anxious. Be advised that the American Psychiatric Association is now engaged in a major internal debate (aka "cat fight") concerning the classifications of pain previously labeled "complex somatic pain disorder" and/or "conversion disorder." Don't let ANYBODY hang a psycho-somatic label on you. The best evidence available calls these diagnoses fundamentally into question. There may be no such medical entities. And in any event, facial pain does not qualify as either.

4. TMJ Disorder is widely over-diagnosed by dentists who have inadequate training in facial neurology. Likewise, TMJ treatments have an abysmal record of failures and positive harm to many patients. If you're interested in reading further, start with the 1996 NIH-sponsored Technology Assessment Conference on the Management of TMJ Disorders, which concluded that "there was no consensus on what pain in the jaw signifies; what the condition should be called; and who should treat it. Conference members determined that it was impossible to know what treatments are effective due to the lack of clinical trials and that many people were being harmed by treatments..."

5. Stress can be a factor in anxiety attacks and in pain sensitivity. But depression and anxiety do not as a general rule cause facial pain unless the circulatory system has been compromised in some way. The spasms in your jaw might also be an indication of hemi-facial spasm, a disorder of the 7th cranial nerve due to vascular compressions.

6. It is frequently the case that MS is a difficult disorder to confirm by means of MRI. It takes years for many patients to develop plaques large enough to detect reliably on MRI, during which they are none the less symptomatic for pain and/or movement problems.

Suggest you talk with a board certified neurologist about the observations above.

Regards and best,

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

Resident Research Analyst, LwTN

Thank you so much for your response, it has given me great insight. However, it makes me worry… Am I guaranteed to have something? There is no chance that the pain and toe numbness was just some weird fluke and nothing serious?

With your range of symptoms and the severity of some of your pain attacks, what you are dealing with isn’t a fluke. It’s serious.

A doctor would be best qualified person to determine your diagnosis. But you are right, MS would show signs on the MRI.

There are so many things that would need to be evaluated. For example, there are other condition such as diabetes that can cause sensations of tingling or numbness or neuropathic pain in the extremities. Some medications can cause it too. Do you take medications?

Can you describe the jaw pain? When you say your hair was sensitive, where did it hurt when you touched your hair.

When my level of pain is high I cannot touch my head or wash my hair because it triggers pain in my face.