Hi. Just found the other day that the Dr. suspects MS. Seem like a cruel joke!!!!!!!!!!!!! Went to family dr with ear pain in Sept, He sd no infection & gave Allegra. (Ear & teeth & jaw were killing me-I assumed sinus infection so bad it was affecting ear with pain & hearing loss.) After that, went to see dentist, thought I needed tooth pulled. He did xray-tooth was ok-but there was imflammation, maybe night grinding. Bought a night guard. Still too much pain...Went to ENT who ordered MRI. ENT called to adv no tumor, schedule w/Neurologist right away because of plaquing. No help with teeth, jaw, ear!!! Went finally to see Neuro the other day & he gave the bad news. He thinks MS but never really mentioned this other stuff being related. I can't handle pain anymore & interrupted him & asked what dr I needed to see for these issues. At this point, he prescribed a nerve block, Gabapentin (sp?).
Since then, I came home and have been researching both TN & MS. Not sure if I do, in fact, have MS (though it sure does sound like it, I go Monday for some sort of graph/electrode test & lots of bloodwork, too) BUT I'm sure I have TN and it sounds like others of you do, too. I was hoping to get relief & now it seems like this is just the beginning.......I'm really scared.

Hi ScaredNewbie,

My name is Loretta Jewell, I'm not sure how I ended up here on this site. I am a member of NeuroTalk, but always go to the RSD ' Reflex Sympathetic Dystrophy' I also have TN
It's a super good idea to do lots of research. And reading as much as you can on the TN site and the MS site. It is scarry to be diagnosed with either of these, let alone both. I go to support group meetings for RSD. If you live in a larger town, there probably is a MS group or chronic pain group. To talk to others in person, is so supportive. More testing is very good thing- to either confirm or rule out MS.

Please let us know what you find out, and how you are. We really care here. Sometimes, it's comforting and helpful to even go to other threads, like RSD to learn coping skills and just get encouragment. There is no cure for RSD, it is one of the most painful disorders-very high on the McGill Pain Index It is often misdiagnosed. It took me 4 years to get it diagnosed. A very large percentage of Drs. have never heard of RSD let alone know what it is. Diagnosis and treatment is extremely important in the first few months after injury or surgery to get a remission. Children get RSD. Blocks and gabapetin are usually prescribed along with depression meds, high blood pressure meds, anti-seizure meds , sleeping pills,
anti-anxiety meds.

I have full body RSD now 12 years. I've learned to cope, be grateful for things I can do, not what I can't do anymore. I use music, scented candles, flowers, funny movies, looking at picture albums, family trips, etc. Like grieving, loss of one's health over time, takes time to adjust and accept. I needed professional help, and thankfully I found a neurologist, psychiatrist and pharmacologist all in one DR.

I know you are really scared. I would give you my e-mail, but it's down right now. If you were a member, you could private message me. I 'm on the RSD thread a lot, and sometimes the TN site. Take care, and please know you are thought of by everyone that reads your message. Those on here are really a compassionate caring group. Loretta Jewell