I have been to see my neurologist (yesterday) and if i wasnt worried before i am now!!!! my gp said that she was posisive that it was tn, but the neurologist did a very good job of scaring me, she said that if it is tn then i would proberly have an underlying health problem, has anyone else been told this, if it wasnt then it would be unexplained facial pain and all they could do is treat the symptoms, im now waiting for an mri,
Hi Emma,
Firstly let me say - do not let your dr scare you - your neurologist obviously has no bedside manner, and children may and do get diagnosed with TN, so she (your neuro) sounds like she doesn’t know enough about this condition to be saying such things to you.
Secondly, yes it is possible in a small percentage of cases, that there are other issues contributing, causing or other to tn itself. Try not to worry, in some cases I’ve heard where someone had a thyroid isssue that had triggered there tn and in that case, once their thyroid problem was fixed - their tn was just “gone”. Cysts, tumours, MS (multiple sclerosis) can happen but veinous or arterial compressions are the most common causes for tn, with the vein and artery compressions being the cause 90% of the time.
Age does not matter to tn, the illness doesn’t discriminate based on how old we are. I was in my late teens when this began, I’m now 37.
Personally, if you have an option, wait and get your mri done and then get a new neurologist, look for one in your area that has more experience dealing with this condition, the TNA / Facial pain Association can help you or just ask in the forum / chat here if one is known in your region.
Your neuro may be a nice person, but they don’t know enough to warrant talking to you like that.
As for your question about whether others have been told this - yes, I have. The current thinking is that I have undiagnosed MS. This is a possibility for me, but until they prove that to me, I’m just trying to live as much of my life blissfully unaware. For me, MRI’s where I live are of poor quality, images taken with machines no greater than a 1.5 Tesla. That’s OLD school stuff.
It should be 3d, thin slice MRI taken on a machine at least a 3 Tesla to get the best detail. MRI, however is also really a formality. We all get it done, well most of do - just to rule out the other possibilities. So don’t worry yourself about the test - as even with the small percentage possibilities that “may” be around for some of us - there’s nothing to worry about until you know for sure one way or another. Stress now will just cause TN to flare painfully.
Sorry if this is too much info, I’m hurting, tired and have to get up in 2.5 hours - it’s 3 am here in Australia and I just can’t get to sleep. But I hope I can convince you to let go of that your daft neuro has said to you especially in that way. That makes me angry when I hear of “specialists” who don’t know about the correct information.
Cheers ~ Kerry.
Yes, I have been told that there can be other causes for this. Try not to let the neurologist scare you. I think that what the dr was trying to tell you is that a MRI is needed to rule out other problems. It is a standard process that we all go through. They will be looking for tumors or masses that may be causing your symptoms. Not to scare you but they will be looking for signs of MS as well. Listen for what its worth…I know how scary it is. Just remember the more you know about this the better off you are. Because the truth is that very little is known about this stuff. There is no known cause for TN, not for sure any how. They believe there may be some links to other issues…but, you know. Doctors don’t like loose ends and neurologist are some of the worst for ego’s. So, get educated as soon as you can. I had to change neurologist here a while back and during the process ran into an idiot that called himself a neurologist. They are human and they make mistakes. Just remember they work for you. Make them explain themselves or fire them and get one that will. There are options that do help. Hang in there.
Hi Emma, I have had TN for four years now…I am as healthy as a horse except for the TN…I have zero underlying health problems…Kerry and Laura are right in what they say…hang in there…Vic
Hi everyone thank you so much for your advice it is welcomed, as this is hard espeacally when i then have to relay everything to friends and family and there asking questions, which i have forgotten to ask.
If there is one person that can go with you to every visit by all means take them with you. Some times the medication can make your memory very bad. Not to mention when all of this is happing to you…it is very hard to pull out of the feeling and really listen to what you are being told. More than once I was so greatful that my husband, who is very level headed, was there with me. As far as relaying all of the information to others. Well, there are places for them to go to find out about this condition. You should encourage them to do so. I have found that most of my friends and family want to understand and the more I can give them as far as information the better it is for all concerned.