Has anyone had an experience like mine?

1

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!

2

Hi HelpME:

I am a nurse who also has MS and TN. I am sorry you are having so much trouble. I can only speak to my situation, and give you general advice. I was diagnosed with TN 4 years before being diagnosed with MS officially (that is when I started having other symptoms). It is true that TN can lead to it (MS), but not everyone who gets TN will have MS. Having said that, if you should get numbness around the area of your TN it is possible that you could have MS. The MRI will show lesions in various areas for MS. In the case of TN, the lesion is most likely on your 5th cranial nerve, which is in your brain stem. Depending on the type of MRI you had (Tesla strength, and whether or not contrast was used), the lesion should show up, but may not early on. Within a year or two it should show something considering your other symptoms. The fact that you have more than one neurological symptom at the same time as your TN raises suspicion. However, like your neurologist said, you may have vascular disease, which can cause both TN and peripheral numbness. Unfortunately, it is a wait and see game sometimes. You might want to ask your neurologist to do some evoked potentials. These electrical tests show slowing in nerves that are demylinated, and often show up positive long before a lesion is visible.

I would suggest asking for these tests, and try not to worry (HA HA) too much just yet. The trigeminal nerve runs all the way up through the top part of your scalp, so touching it during an attack can certainly cause symptoms in TN with or without MS. If you get the numbness in your foot again, call the neurologist while it is happening.

Hopefully all will work out fine. Keep us posted.

3

If I were you, I'd see a neurologist for a workup...it might involve some testing at the doctor's office for certain signs of MS, a history of symptoms (some of which you may have dismissed as just stress related), reflex tests, and also an MRI scan of the brain. TN is not usually a first sign of MS. In fact, having both is rather rare. As one gets older, TN flares become more intense and frequent. I had a few episodes when I was in my fifties, and now I'm 62 and the flares have become more frequent and severe. There's medication for symptoms, but also a day surgery called a glycerol rhizotomy that will numb the affected nerve root. That is an option if the medication d0esn't work.

I was diagnosed with MS in 1985 and have been managing well since then. If you do get diagnosed with MS, then there are plenty of things you can do to manage it and treat it. So, don't stress out too much, but try to concentrate on all the parts of your body that work right and be thankful.

If you get a diagnosis, then consider getting info and support from the National MS Society and/or the Multiple Sclerosis Association. Good luck.

I waso