My sister who also has MS has this problem. She was diagnosed with Trimegal something or other. She takes Tegretol and this seems to work for her. Good Luck and God Bless!

irish...
In my opinion all drs have the tendancy to be like your neuro before. I have seen 5 neuro's plus one from the Mayo and all have an arrogance about them as do any other dr non-specialist. They see so many people a day that they forget WE arent the ones that put them in the mood they are in. Be patient with any and all...you will get more flys with sugar than vinegar. Having said that I have also had my share of drs beating me into tears for just the sheer fact of not listening.

My suggestion is to write a list of all your symptoms new and old. Mark the ones for yourself that are more frequent or more concerning to you at this moment. (ex: your jaw and ear pain) etc. Then go to google where you got the information on Trigeminal Neuralgia and print one or two pages that show your symptoms that match what they describe. Take all this in to your primary dr or neuro whichever you decide to see, and tell them how long this has been happening, how things are steadily changing and that you request the appropriate tests to rule it out. My primary was the only one that would listen to me for the longest time....I went through him for MRI's blood work, etc. Then when you do see a specialist you can come armed and ready and stand your ground with more information as to where his possible demeanor cant bring you down.

By the time I reached my current neuro (15 yrs plus with symptoms) so much was ruled out... and I always knew it was MS. So do not give up the fight for a Diagnosis. If it isnt MS fine! But something is not right and go in to the drs knowing that you know your body better than ANYONE and they arent Gods, they make mistakes too. Stand firm.
Good luck to you
Janel

Sounds like TN.I have MS and TN.Had to go to my dentist first,to verify it's not a dental problem.
My Neuro is great,and he quickly got me on Tegretol. If the Tegretol stops or eases the jaw pain,it's TN. So sorry you have this . But there is help. I've been free of my facial pain since Thanksgiving. (One Day of pain but nothing like before)Take care

Definitely make a list of all your symptoms. My PCP treated each one individually, never put everything together; had he done so, I would have been dxd sooner.

Hi all,

Thank you all for your great responses.I feel somewhat better knowing that others know how I feel because I have been feeling pretty isolated about this jaw/ear pain for such A long time now.It is really great to hear that there may be a solution with the Tegretol.My husband reminded me that I had taken Tegretol many years ago. I had takenit for my bipolar but it fought didn't work good. but back then I didn't have this ear/jaw problem.I hope I can take it with my other meds.

Thanks so much for the info on how to present my symptoms to my doc. I have decided to stick with seeing my internist first. I feel more at ease now because all of the things he dx'ed before as other things also are linked to MS...and in highly respectable online reference sources. He is really into doing research and he always recommends that I do my own research since as he puts it, "knowledge is power".so thank you all for caring enough to answer by doing so you ask have given me a great measure of peace...Irish

Hi, a very important Thing is attitude!! When you greet him, look at him straight in the eyes, smile and listen to how he is doing, by showing you care about his feelings might make him relax. It works for me. Also if I'm talking or reading and I'm not looked at, I stop talking ,wait and only resume when looked at my face.,always smiling of course. Even when I have googled everything I ask a lot of questions, some I know the answer, some I don't, this way I can tell how deep into the subject he goes. LOL. And if he says It's all in your head, smile, nod and say " yeah I know lessions are in the brain" . At least you'll be able to hide the anger with a smile. Have a good visit and let us know. Love Alma

Long before MS i suffered realy bad problems with my teeth and jaw and a dentist told me that my teeth were out of alignment and this was pushing the bones in my ears which in turn were causing all the problems.

So my advice is to see a good dentist first.

Hi Alma,

That is some excellent advice! The doc and I are actually great friends. I was one of his very first patients when he came to Texas from Louisiana. I immediately "took him in" and told him all about great places to eat and fun things to do and places to go. He was really glad I told him these things and even wrote them down. We have gotten along very well since then.

The only problem I have seen lately in him is that he is beginning to become one of "THEM". You know the doctors who start sliding into the comfy feeling of their practice with the other "good ole boys" doctors. They go to conferences and conventions. They are reminded several times that "its more likely a dove sitting on the telephone wire than a parrot"------(in other words "if it walks like a duck, swims like a duck and quacks like a duck then its a duck) and that all translates out to: if it looks like a common ailment that many of the population go through such as TMJ then that is most likely what it is. To go further and think of TN would require more time and more money. Something a very busy double booked doctor is not always eager to part with.

I am starting the business of gathering my symptoms--all of them and believe me their are a lot. And I will print out a 1-2 page from Medline on each symptom showing how it does relate to MS. I plan to put the more recent ones in the front. I am going to put all of this in a slim binder so that it makes it easier for him to read, you know with paper protectors and such. I am hoping he will see how very very serious I am. Maintaining eye contact is something we usually do anyway. He is the best ever at doing that. I will also ask about his family and what he has been researching lately. He and I both share a deep love of research. He always encourages me to research any diagnosis I have been given and even when he is stumped over some thing he will actually tell me to do research on it as he will as wel and then bring with me the research and he and I will discuss what we both found and he will make a diagnosis from that. So he is really a good doc, just a little jaded now and not as open minded as he once was.I will definitely not let myself get upset and I will stay determined to smile throughout! Thank you!

Orsova,>>>I think it is a good idea to see a dentist but I do not have dental insurance. Now, if they find nothing I will most certainly see a dentist and will hope that they will take payments! Thanks for the great advice! Thank you and love to all! Irish

I'm sorry you don't have affordable dental care. .I's so fortunate also to have a great Dentist.
Maybe the Tegretol did not help before,but it might do the trick this time. I take 200mg 3 times a day.
Good luck to you,and may you be blessed.

Hi Fae!

Thanks for the blessing, I could really use those right now. Blessings to you as well. When I took the Tegretol before it was for my bipolar symptoms. i was not really having any obvious MS symptoms at that time. Only ones that now as I look back seemed to me to just be a part of aging or my bipolar or ADD. I have learned since that many supposedly "bipolar" people were misdiagnosed when they learned they actually had MS. Seems that many of the psychological and mental issues are the same for both. When these people began treatment for MS they discovered great relief from the "bipolar" and were then able to be weaned from the sometimes dangerous drugs used for bipolar.

I have been taking Depakote 1,000 mg. as a mood stabilizer for well over 5-6 years now. As a result I have been diagnosed with Infused Fatty Liver. As my docs explained this is a form of fatty liver that is associated with too much alcohol or drugs that use the liver as their only filter. Depakote is one of those drugs and it even has a big black box warning about it. 1,000 mg. is just about as high a dose as you can take for bipolar. My docs were pressuring me to toatally get off of Depakote and on another drug. I tried 500mg for about 8 months and it didnt work. I just stayed very hypomanic and never slept. I then went with 750mg and stayed with it for 3 months and had to eventually go to 1,000mg again as the 750 was no better than the 500. I saw my docs again and they almost begged me to get off the Depakote and just try another drug. The problem was I had tried other drugs and none of them ever worked. I could not put my family through the stress of having me go through experimental stages again. I asked them when they thought I might end up with liver disease--meaning cirrohis or hepatitis and they gave me 25 years. An actual number, pretty scary when you hear it even when it seems like a really long time. But I chose this route because I wanted to be as "normal" as possible for my family--they deserved a decent mom and wife. To me it now seems everything could be tied up with either MS or some other neurological disorder. Everything is so crazy right now. I see my doc on Tuesday for consultation and schedule of an MRI. I am so confused, unhappy, and traumatized that all I want to do is stay in my bed and hide. I just want it to all be over with. I want to know what is wrong so that they will be over to treat it. Maybe then I can feel like I am living a "normal" life.

BTW....I love your little Boston Terrier. I have one as well. Her name is Lessa Ladybug and she is adorable! One brown eye and one blue. Well thank you again and hopefully this Tegretol, which I will tell my doc about, will help with the TN.......Irish

Irish,
Gotta love those Bostons !!Cookie,is our little girl.She's Brindle(like a chocolate chip cookie)hence the name.She is a bright and shining star around here. Miss Lady Bug sounds like a real cutie !!
Hope Tues. at your Doctor went well for you. Keep us updated. We care about you.
fae

Hi Fae! I am going to get my MRI's this coming Tuesday since my doc at the last visit went ahead and ordered them. Feeling very nervous because I am confused about my emotions. Part of me wants to be MS free....the really smart me....and another part of me wants to have it so that people will see that I have not been FAKING symptoms all these years.

Very frustrating when my own mom tells me that I am consciously faking symptoms just to "get pity"...her words.

Little Lessa Dog is a brindle also. More black but the brindle is definitely there. Aren't you glad we got girls? They are so sweet and do not bark near as much as the boy Bostons. Last night my poor baby was barking up a storm....due to a storm!!!.....and then crying so pitifully that our whole household could do nothing but try to comfort her.

We have had such bad drought weather here in Central Texas for so long that when a storm comes through it is basically like the first one she has ever heard. She absolutely hates storms....the thunder, the lightening and even the rain. If the rain is starting up and it is just soft she wll start whining because she knows whats to come. She kept me up for hours last night and she just did not know what she wanted to do. She wanted to sleep between me and my husband but she prefers to sleep lower on the bed where her face is facing the fan. She gets to hot between us. I had to move her around so many times and tried to make little hoods out of blankets for her so that her ears were covered but her nose was free so she could breathe. Poor baby was so exhausted she just kept yawning and pawing at her eyes.

Finally about 4:00 am the storm quieted and she finally gave in to sleep and is still sleeping right now, despite alarm clocks going off all over the house! Take care of yourself and sweet little Cookie. She really is adorable with her little "fairy?? angel???" wings! I think she would make the cutest little fairy or little angel. Her colors are beautiful!!! Luv ya lots Fae!.....Irish