Hello all, this is my first post. I have been diagnosed with atypical TN since 2005 ( I believe ). I have always been blessed with long remissions. This episode began in early February and hasn’t stopped. It has steadily gotten worse. I have been to the neurologist several times. My last appointment was yesterday. We are scheduling an MRI, MRA, EMG and a huge round of blood work. This is the normal round of tests for me to get every few years. He seems to stay concerned that I have MS. This time he said we would do all of this before doing a spinal tap. I was just wondering if other people on here live with that worry.
I have had longer periods of pain than this unfortunately. I am not medically qualified but often we spend time worrying about the what if???? I have another serious illness which could be terminal, you just have to learn to put it to the back of your mind, live in the today and hope for a better tomorrow with TN I am sorry to say. I hope it goes to sleep again soon for you :-)
I'm 49 - and MS was ruled out on a regular MRI - within a month of diagnosis last year
I went and had an MVD after reserching here and facial pain website
Picked an out of state MVD guru - and went that route ----
everyone has different journeys here , but common threads
TN is not always connected to MVD -- sometimes it's whiplash/neck related, sometimes runs in families, sometimes we will never know
Somebody else will post soon
Become your own advocate and learn as much as you can!
Welcome
hello ikdintexas,
I'm a fellow texan....not too far, probably 100 or so miles. My neurologist is from Wichita Falls, he comes to Decatur 2 X per month! I just had my 2nd MVD a few months ago...I've had some complications but so far, no more TN pain!!! Hope your pain is better.
Since mine is ATN, I don’t believe the MVD is an option… The pain is getting better, thank goodness.
Tammy, wow decatur isn’t far at all, just down the road. I can’t help but wonder who your neurologist is. I have seen a few diferent ones of the years. Currently I am seeing Dr. Bartel. I believe he travels out of town some, so I can’t help but wonder if it is him… small world. I hope your are feeling better.
OMG!!! Dr Bartel is my neuro!!! I love him...he is the kindest dr I've ever been to! I'm doing pretty good...just having lots of fatigue....guess that's to be expected when you have 2 brain surgeries in 12 days!!! I just need to take it one day at a time. Glad your pain is better.
WOW, small world… lol. I hope you are feeling better.
How long have you lived in Decatur? Hve you ever had a pain block? lisa
Well, no MS. We learned I have a severe B12 defeciency which as my neuro put mocks MS. So, now I don’t have that worry hanging over my head. My pain is still horrible. He is planning a nerve block for next week. I am not sure what that really means…
I've lived in Decatur/Paradise for about 30 years. I lived in Bowie for a little while...it's about half way between Decatur & WF...but you probably know that. I'm SO glad about the diagnosis of no MS. I've heard of several people having B12 defeciency problems that can cause various problems that mimick other conditions. In fact, my chiropractor's wife does the "whole health" side of the chiropractic business...and he told me about a month ago that she went to a seminar and one of the speakers went in depth about the fact that B12 defeciency can cause trigeminal pain! Anyway, I'm not sure what Dr Bartel is referring to about a nerve block but PLEASE find out what it is before you do it! I can't stress how important is it is be your own advocate!!!! I have sure learned to do that through this journey I'm on. Don't let him/them/whoever do anything that could damage your nerve without getting on hear and learning more about it. Good luck and feel better!