Hello. I am new to the forum and wondering if anyone might be able to help (?) My neuro suspects I might have TN and said he could start me on medications, but I am holding off on that. I want to be sure my symptoms are coming from TN and not anything else before starting on any type of meds. It started out with left sided facial numbness about 5 months ago then I started having a "deep ache" in my head on the left side, as well as dull headaches that are starting to last longer, for most of the day. I have had striking jaw pain as well as burning mouth sensation, facial numbness seems to get worse with the "deep ache" at times. I have had normal MRI and CT, blood work only showing B12 deficiency.

I have also experienced numbness in my left fingertips, as well as left foot (which seem to be getting better) with occasional "shocks" of pain into fingers. Has anyone experienced neckache/backache, generalized bodyaches with this? I wouldn't think this would be a symptom of TN, maybe of the B12 deficiency but I have been on B12 shots for quite a while. Any advice anyone could give would be great...................

Welcome to Neurotalk A1. Sorry you are getting all kinds of pain and numbness. The body,neck aches arent really a symptom of T.N. nor the shocking, numb in finger and toes. The rest sure dose sound like a T.N. monster messing with you/
as far as being put on medication some meds for T.N. are used for other pains too. what type was mentioned? T.N. or an aggravated trig nerve dose not always show up on scan or MIR.
Vit. B good to take for nerves in genral so Id keep at that. Have you tryed heat on side of head, neck or face? some of us find it helps calm things down .
Keep seeing doc and make list of issues maybe even get 2ed oppinion from another neuro or a pain doc. and most of all learn all the info you can about the symptoms you are getting . Knowlege is power .read the stickies at the top some great info, and list of meds that help somewheres up there too. Keep us posted and let us know if we can help you. It is nice to meet you and I am sorry it is because of being with pain like we are. It would be nice if we were both winners of the lottery or something eh?!! Praying you find the right answers soon and sending low pain wishes to you.
PEACE
BMW

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

Hi AnotherOne,

I'm sorry to hear about your sympton and diagnosis. I have TN also and my symptoms sound like yours. There are three nerves that come together at the temple area. I only have the bottom one effecting my jaw line, numbness, and of course pain and headaches.

I have had the shocks, burning sensation or pain in fingers and feet and now more places, but it's not TN related. I have RSD Reflex Sympathetic Dystrophy. It took Dr.s 4 years to diagnos. RSD usually follows an injury or surgery. There is skin discoloration,sweating, swelling, pain, burning, or ice cold feelings. There is a thread on NeuroTalk under Reflex Sympathetic Dystrophy. I'm not saying you have this, there are a lot of disorders that cause nerve pain or spasms, jolts, shocks, etc. A neurologist or orthopedic specialist, like sports injury specialist for feet or hands could be a Dr. to see. RSD is a very difficult disorder to diagnos and very few Drs. even know about it.

It is not uncommon to have two different disorders going on at the same time. Good advice to get all the knowledge you can and keep see Dr or a new neuro or pain management Dr., they handle a lot of different chronic pain and nerve disorders. Take care and let us know how you are doing. Loretta Jewell