last 3 weeks my pain levels have been through the roof, started to calm down over last couple of days but something strange has since happened, started on the left, 3rd day now and still getting flashes on both sides and constant ache almost identical on both sides.
seen my gp today and he was very confused, am 32, had this for just over a year, not had days respite even with all the different meds, have had some good days but always some amount of pain. doctor says this is very odd for someone my age and now he says from the pain symptoms i have given he thinks it has gone bilateral, am having mri next week and got follow up appointments with neurolgists and neurosurgeons and pain management so am with the right people, the reason for my question today is that gp today mentioned possibly MS, due to age, fact im a guy and that its now gone both sides, any comments? is it that unusual for it to progress to both sides within a year? should i have had complete pain relief from the meds? my doctor says my condition is very interesting and wants me to keep him informed so he can follow my case, quite reassuring but at the same time WHY ME?
i know next to nothing about ms, spent the last year reading up on this, time to start on a new subject possibly?
I also have bi-Lateral. I have heard it is not that uncommon. I think there is a group on the site for it. Try not to stress about MS until you have your MRI and know something for sure. There's enough to worry about with the TN!
I was 20 at the onset, and by 21 I had gone bilateral. I am a woman, so slightly less abnormal than you. Don’t worry, very few TN sufferers also have MS. And see a neurologist, a GP can only take you so far.
I also developed bilateral within a year. I never had complete relief from medication. I have had MVDS on both sides. Right side only stopped the shocks, so I have a PNS on that side. Left side MVD was a complete success, and I am now med free.
Best of luck to you!
Thanks for all your kind words. My gp just seemed to throw ms in the mix the other day, I think just because he was at a loss. I wonder what the cause could be for. It to become bilateral within a year. Strange enough time getting it on one side of but why do only some develop it on both.? Christine did you have compressions on both sides? Was anyone able to give any sort of explanation? It seems to develop into bilateral within a year, going from the small sample on here anyway. Does the new side get as bad as original.? Got mri this week coming then 2 more weeks till follow up appointment and hopefully get some sort of answers and a plan to move forward with, I will be hoping for something to show on mri, something they can fix or remove so I. Can try and get my life back.
I have very virulent herpes simplex viruses sitting on all my trigeminal nerve branches and enjoying themselves. Mine is in other words not restricted "geographically" or mechanically. Can only speak for myself, though.
And don't worry. Your life comes back. Make sure you grab it by the b*s and live it, too! =)
I had 2 veins compressing my right trigeminal, and 1 vein and 1 artery compressing on my left. My original MRIS did not show either of these, but the high resolution MRI I had at my neurosurgeons did show them, at least partially. In my case, my surgeon believes my TN is a result of an Arnold Chiari Malformation, which is a structural abnormality that causes the brain to be slumped into the spinal column. This could certainly have affected the positioning of veins and arteries.
I can only guess that my left side TN was as bad, if not worse, than the right side, as I on,y started getting pains on that side while already maxed out on my dosage of Gabapentin for the right side pain.
Christine
I have bilateral ATN. Started on left and the right joined in a year later. The Drs also frightened me when I started having bilateral pain saying that I might have MS. My mom does have TN and MS so it really scared me! Well, two MRI/MRAs later I do NOT have MS. I didn't have a compression show on my tests either though. I read a statistic that only 5% of people with TN have MS.
Don't jump ahead. Stress and anxiety only make TN worse. So many Drs don't know very much about TN except for outdated knowledge.
I deleted my post to the doctor whose bio I cut and pasted the comment
"According to what seems to be a knowledgable doctor who deals with facial pain issues, 40% of living people and up to 50% of people who autopsies have been done on, have nerve compressions without ever developing classic TN symptons."
I had some email exchanges with him and after seeing my xray where a formaldehyde material was overfilled into my nerve canal and chemically burned it, he stated - The presumed origin of the pain is usually wrong and is often irrelevant, regardless of what an X-ray shows.
OUCH! It was clear from my xray and my information to him that it was a formaldehyde based material that was wrapped around my nerve. And if the xray wasn't enough to convince a doctor, the surgeon who took the overfill out of my jaw after he broke it in half....fun recovery from that ... put his eyeballs on the nerve and confirmed what any layman would have been able to conclude, the nerve was damaged right where the material was wrapped around. As was stated by atleast two of my doctors, formaldehyde is a fixative and is designed to permeate whatever tissue it comes in contact with. It embalmed the nerve, never to function properly again. Those frogs in biology class never came back to life and the reason we used gloves when dealing with those critters is because formaldehyde is highly toxic to anything it comes in contact with.
Don’t worry, very few TN sufferers also have MS. And see a neurologist, a GP can only take you so far.