apparently i read if you have TN between 30-40yrs of age (esp bilateral) theres a good chance its early stages of MS...has anyone else been told this or been diagnosed with MS?
look at the groups tab above -- you can read -or join a group and post
there is an MS group there
Kimberly
oh right il have a look thankyou:)
Kc Dancer Kc said:
look at the groups tab above -- you can read -or join a group and post
there is an MS group there
Kimberly
I was actually diagnosed with Primary Progressive MS (a steady decline rather than the peaks and valleys associated with 90% of the pppl that are diagnosed with Relapsing Remitting MS) approximately 9 months before my 1st TN attack. Since then, 9/10, I have dealt with daily (or nightly in my case) pain with the exception of my first round of IV steroids. My physicians say it is not uncommon for people with MS to have TN but have not heard which comes first in other cases, the MS or the TN. Just relating my experience, by far means no expert.
I have heard from many reputable sources that TN occurring in those with MS is a very late symptom. Though in saying that my neurologist said that my brain MRI showed no signs of MS but it's best to keep an eye on it. Then again, he was wrong about so many other things lol!
thanks for your reply julie,
maybe the early symptoms of MS are not as apparent as the TN, its only now that ive been diagnosed with TN that i look back over the last year and realise how long ive had all the other symptons that i passed off as me being overworked and stressed, i even told the doctor about my other symptoms and he said it was unconnected, im 35 and see old women with more energy than me.
Just julie said:
I was actually diagnosed with Primary Progressive MS (a steady decline rather than the peaks and valleys associated with 90% of the pppl that are diagnosed with Relapsing Remitting MS) approximately 9 months before my 1st TN attack. Since then, 9/10, I have dealt with daily (or nightly in my case) pain with the exception of my first round of IV steroids. My physicians say it is not uncommon for people with MS to have TN but have not heard which comes first in other cases, the MS or the TN. Just relating my experience, by far means no expert.
well il be taking a list of questions and interrogating my neurologist...i always find with doctors if u read up on things first and look like u know what your talking about they dont treat you like your stupid and they tell you more
Porcelina said:
I have heard from many reputable sources that TN occurring in those with MS is a very late symptom. Though in saying that my neurologist said that my brain MRI showed no signs of MS but it's best to keep an eye on it. Then again, he was wrong about so many other things lol!
ask as many questions as you can while here
you will learn more here than a Boatload of doctors who "know tn"
I was diagnosed with MS at the age of 49, had just turned 49 two months before. My first symptoms of TN started 9 months after my diagnosed and 12 months after my MS diagnosis the TN was in full gear. My TN is right side as are all my other issues - occipital Neuralgia, when I had Bells Palsy, right leg drop foot, but both hip flexors are shot. Anyway in my case I didn’t any TN symptoms until after the MS diagnosis.
thanks julie, i think i should stop scaring myself reading things on google and wait till my neuro appt,everyones experiences are so different from one another that untill i have my scans im just guessing and worrying myself grrr
My neurologist looked at me, noted that I had a hospital ID hanging around my neck (I had gone through my work and got in the hospital through the back doors using my proximity card) and said what do you do ... then told me that because I was a nurse I had done *too much* reading - how rude!!!! :) (I guess he didn't like me asking for this and that, I got big fat "no"s to everything, grrr!)
SuzyQ said:
well il be taking a list of questions and interrogating my neurologist...i always find with doctors if u read up on things first and look like u know what your talking about they dont treat you like your stupid and they tell you more
Porcelina said:I have heard from many reputable sources that TN occurring in those with MS is a very late symptom. Though in saying that my neurologist said that my brain MRI showed no signs of MS but it's best to keep an eye on it. Then again, he was wrong about so many other things lol!
Oh mercy. Please. I have just read all of this and I am going to put my head in the sand and pretend I just did not see it. I just could not deal with anything else besides, or on top of, what I have. All neuros I have seen here have been so misinformed it would not even be worth my while to consult with them.
Funny you should mention this...I just had a major pissing match with my neck/back doctor about this very subject. I had an MVD on October 3rd and now am having what feels like TN in my hands and arms, it turns out it was from a previous car accident and not the mvd, but the rhizotomy I had in July that flared up my neck injury. I had called my neurosurgeon to discuss and he and the surgeons at Johns Hopkins figured out what was going on. My local doctor insisted I had MS because I had TN and wanted to do a spinal tap to prove it....I told him where he could go basically and left. Per my neurosurgeon I would have had the symptoms of TN after MS, not before and my MRI was clear. He also said that the later in life it is ( I am 52) the less likely that MS symptoms would appear. He did say it happens but not often and he also said there are more and more cases of TN showing up with no other issue to connect it to. I wouldnt stress about it unless someone you really trust in the neurology department tells you thats what you have. THere is enough to worry about with the TN and I have found it doesnt really matter where it came from, finding a reason wont fix it.
Hope you are doing well today
Wendy
I have seen a reputable neurologist at the Cleveland Clinic who specializes in disorders like ALS, MS etc to rule out any underlying conditions of my pain. My main concern was I also had fasciculation’s (muscle twitching) but after going through the gauntlet of test he assured me I did not have any of those disorders’.
After a candid discussion he said he can pretty much tell right away from a quick physical test if there is anything suspicious, and most people who have a disorder and experience pain already have other very visible symptoms The other tests are just precautionary. His opinion was it was likely a neuropathy and I should seek pain management (which I was already in).
It's been about 3 years now and t is his opinion was correct…. Other than pain managment isn’t much of a option.
I am 31 and just had a successful MVD 4 weeks ago. My TN started 4 years ago. Before that I suffered from excruciating headaches and migraines for 6 years. (Funny that I haven't had a single one of those since surgery. Makes you think.) Because of the headaches being so debilitating I was checked for MS via MRI (all clear) and spinal taps (all clear as well). I developed terrible twitching in my legs (and sometimes in my arms) some time in those 10 years and they tested me again. I was told it was restless leg syndrome and I take a medicine that I cannot be without otherwise my nights are horrible. (It helps with my arm twitching as well even though it's called restless "leg" syndrome. Oh well.) Last year I was tested for MS yet again through MRI and a spinal tap. I don't know what symptoms I had/have that has made them test me so many times, but I am fortunate enough to say that I don't have MS. I am hoping that the pain is gone for as long as possible now that I have had this MVD, that my newest neurologist isn't test happy, but I will listen to my body carefully.
Hi all,
I was 29 when I was diagnosed with TN ( bilateral) at the time I was under investigation for a multitude of neurological symptoms that I had been dealing with for over a year.
(leg weakness, leg spasms, hand tremors, horrid head pain and some sensory things)
My doctors and I thought MS but every MRI as well as lumbar puncture came back “normal”.
To this day I have no dx of MS, thankfully.
I was able to treat each symptom with a variety of meds and some I just learned to live with.
Because standard literature on TN states that people who usually get TN are older, ( which we know isnt true, based on the age demographics presented here alone) if you’re younger it could be because of MS ( that is partially why a neuro will order an MRI when tn is suspected, also looking for tumors) But we have many TNers who are diagnosed young, and no MS.
Bilateral?? Also an indicator of possible MS, but there are many of us with bilateral TN and no dx of MS.
I think the info out there that we and everyone reads needs to be updated .
I think mris are important, to rule out other causes…but we should all be thrilled when our mris come back normal.
There is no visual diagnostic on MRI to diagnose TN. Those of us lucky enough to get a thin slice, specialized MRI have been able to see veins or arteries compressing the nerve or near the nerve. That being said compression is NOT the cause of TN.
They don’t know what causes TN.
Decompressing our 5th cranial nerve has shown really great results for a lot of people, it has also not helped some people.
We should spread awareness and hope for research so they may find a cause for our pain and eventually a cure.
SuzyQ, please don’t worry. You should read and continue to research as much as possible about TN. Knowledge is power. Write down all your questions for your neuro visit, huge
(( hugs)), Mimi
Well, Mimi, thanks for that. I can rest much more easily now. One less thing to worry about.
Kisses.
dsm
there is something to that about the migraines. My neurosurgeon actually told me he was going to fix the right side ones at the same time as the TN, apparently one of the compressions causing the tn also wrapped around my main artery. I dont remember the specifics, but I havent had a migraine since the surgery two months ago and the way the weather keeps changing here I should be in pain right now.
Wendy
ihold said:
I am 31 and just had a successful MVD 4 weeks ago. My TN started 4 years ago. Before that I suffered from excruciating headaches and migraines for 6 years. (Funny that I haven't had a single one of those since surgery. Makes you think.) Because of the headaches being so debilitating I was checked for MS via MRI (all clear) and spinal taps (all clear as well). I developed terrible twitching in my legs (and sometimes in my arms) some time in those 10 years and they tested me again. I was told it was restless leg syndrome and I take a medicine that I cannot be without otherwise my nights are horrible. (It helps with my arm twitching as well even though it's called restless "leg" syndrome. Oh well.) Last year I was tested for MS yet again through MRI and a spinal tap. I don't know what symptoms I had/have that has made them test me so many times, but I am fortunate enough to say that I don't have MS. I am hoping that the pain is gone for as long as possible now that I have had this MVD, that my newest neurologist isn't test happy, but I will listen to my body carefully.
He actually mentioned it would help your migraines? That's interesting. I too should be going nuts right now with the weather changes and Aunt F around the corner but I'm fine. I'm surprised. I know that I get (got?) migraines because I've had them since I was 14 and the pain is different from the TN pain. I know that the NS worked on 2 different arteries and 3 cranial nerves (5, 7 and 8) but I don't know what 2 arteries. I'm going to have to get my OR report and check it out. If on top of no TN pain I also will no longer have migraines that would be amazing!
Wendy, would you mind keeping in touch with me about your migraines as well? It would be great to share notes with you.
-i
crashgirl said:
there is something to that about the migraines. My neurosurgeon actually told me he was going to fix the right side ones at the same time as the TN, apparently one of the compressions causing the tn also wrapped around my main artery. I dont remember the specifics, but I havent had a migraine since the surgery two months ago and the way the weather keeps changing here I should be in pain right now.
Wendy
I would be glad to keep in touch!! I dont know what he fixed, but when I had my consult we were looking at my MRI and he pointed to a compression, it may even have been on the nerve, and he said he was going to give me "the two for one special" and fix my migraines, especially since it is rare for me to get one on my left side. Dr. Brown was good to his word, two months later no migraines.'
I wish I was more versed in what he repaired so I could tell you more, but all I cared was that he fixed the TN first and foremost, the rest has been a huge bonus/
Wendy