I am 63.  I have all the symptoms of MS with a Negative MRI.  I am desparate for help as I am losing the ability to walk and this all in just a year and a half. I can no longer work and am on SSI Disability.  I can't find a Neuro to do a spinal even though all tests done have ruled everything else out.  A spinal. What is the deal. I don't want to lose my ability to function, live in my home or take care of myself. Please help me. I am an RN with 25 years experience I can't believe this is happening to me.  

Hi,

I am desperately seeking help for what I have been going through for the past 2 years.

Here's my story in a nutshell, After I graduated from college,, I started working and for about 8 months, I was SUPERMAN.  My mind was extremely clear, my thoughts were patterned and coherant, my creativity was high, and i was confident as hell and felt I could do anything I wanted to do in life.  I was also happy.

Suddenly, in the span of a week or so(dont remember), with no physical trauma or no traumatic event in general, it all went away.  I started feeling detached, couldnt process my thoughts, emotions and lost my previously superb memory.  I wasnt happy, and it felt as if my neurons and neurotransmitters were all tangled up and not working. Lightheadedness, (no headaches though), and total loss of emotions.  My detachment was crazy, didnt know why I was doing what I was doing and didnt feel any drive or motivation. Lost a bit of sex drive also.
After 2 years, my foggy head finally made me go to a psychiatrist, who has prescribed me cipralex(10mg).  she said I was undergoing severe depression.  Have taken it 1.5 weeks, and although havent felt any change in my major symptoms(loss of intelligence, thoughts, feeling), I am feeling a bit clearer in the head.  dOnt know if this is a start or just a teaser.  Feeling anxious about my future, and general anxiety is also there.  
Feel like my head is trapped in a cage, and I cant be imaginative and intelligent with my self and others.  

Please offer advice

Yes, I think there is something to our pregnancies triggering the first symptoms.  In talking with Quixotic, she said that it is very common for a woman to experience onset of symptoms right after giving birth and then having remmital of symptoms after subsequent pregnancies.  Ofcourse fibro, CFS, and lupus also do that.  I was already having the fibro symptoms before I had children, but these symptoms that started after giving birth are very different in nature for me.  The are very much neurological.  I am finding out that neurologist are really starting to call fibro a neurological disorder as well, so I guess it is still possible that all of this is just new manifestations of the fibro.  I wll be shocked if something doesn't show up on the MRI that I am having done though.  

I do have sore throats quite often with the swollen lymph glands, but I have never been told that I had the Crimson Crescents.  All of that makes me wonder if it is CFS that you have.  I really hope not, because I have heard it can be extremely dibilitating, and the treatments just aren't there for it like they are for some of these other diseases and disorders.  I just so wish you had access too better medical care.  The more you tell me about your doctor, the more clear it is that he really just doesn't know enough about this stuff to give you a proper diagnosis.  Hang in there and know that we are here for you.

Julia - thank you for the words of encouragement.  I am sorry you are sufferring as well, but it sounds like you really have a good attitude about things.  

Both of you take care!

Jenn

Hi Jenn,

I was just checking to see if any one had replied to my posting on the forum and looking at your symptoms, again like I said before, I can relate.  Though you know I have not had an MRI.  But what struck me was that you and I are the same age and it was pregnancy that triggered what is going on with me now.

I also read about things like when its hot you feel your hands swelling but they're not - I get that too.

And the lymph glands, I have a swollen gland which has been up for over two years and does not hurt, the GP checked it and called it a sentinel gland but it has been up all of the time.

Weird thing to mention, regarding ME/CFS I have read that during a study over 80% of patients with ME, Fibro and MS symptoms examined had these things called Crimson Crescents which are redness to your throat without a sore throat.  They appear on either side of the area where that bit hangs down just before your throat, can't remember the name of it, just before your tonsils.  But they are usually crimson in colour. I do have these.  My GP thought I had strep throat and gave me antibiotics while I waited for the swab test results - no bacteria was found, it was negative.  And my blood count was normal.

Hi Jenn,

Hope you are doing well. I just read this thread and wanted to add my own two cents and support for you. I have had MS for 15 years and probably 10 before that, and it is very manageable. That said, I was terrified before I found out like you are. It is VERY common for MS patients to self diagnose before they get an official diagnosis. The MRI is the main way that MS is generally diagnosed; I don't think CT scans ever show much.

The most important thing I did for myself after I got my diagnosis was to get a good doctor. i got recommendations and interviewed THEM. Basically I stated, I have this diagnosis, these are my symptoms, these are my fears, how would you deal with me as a patient? Through this process I found a fantastic doctor and discarded the pretty bad one I had previously. Also, getting an MS specialist is always key. General neurologists are just not up enough on the latest treatment, which changes daily.

Good luck and if you do have MS, it really is not the end of the world. I believe that what I've learned through this disease has made me a happier and much more fulfilled person. Sounds crazy but it's true.

Julia

Hey Quix,

Just wanted to let you know that I got the results of my CT of head and chest that my internist and rheumatologist ordered.  There were no abnormalities on either.  I was curious as to whether a CT scan will show any evidence of MS, or if the MRI is the only way it will show up.  I still have not gotten the results of the holter monitor.  I turned it in 3 1/2 weeks ago and still have not gotten a call.  I have left three messages about it.  They told me the first time I called that the report was in but the cardiologist needed to read it before anyone could tell me anything.  That was over a week ago.  Is it common for this to take so long?  I also found out my neuro appointment is on the 18th of this month.  I will let you know how that goes!  I hope you are doing well.  
Take care.  Jenn

Hey Quix,

I hope you have been doing well this past week.  I have had a rough one myself.  I just had a quick question for you.  I finally had my neurology appointment last Friday only to find out that I had been referred to a clinic that is out of my insurance carrier's network.  I had to leave before seeing the doc because there was no way I could afford the extra expenses involved with seeing an out of network provider.  I was devestated to say the least.  I called my internist, and her nurse suggested that I look up the list of providers in my network and decide which neurologist I want them to set me up with.  I am supposed to call the nurse back tomorrow and give her a name.  

Living in Memphis, I am lucky enough to have St. Jude's Research Hospital right at my doorstep.  I noticed that they had a neurologist listed in my network so I looked into it.  It turns out they have a state of the art MS research facility here in Memphis with about three neurologists specializing in the field. It says to just have your doctor send over your paperwork and they can get you in within two to four weeks.  I would be really interested to see one of those neurologists, but I feel like I might be jumping the gun a little.  When I think of St. Jude's I think of children with life threatening diseases.  Do you think my doctor would laugh in my face if I told her I wanted to be referred there?  None of my doctor's are convinced I have MS, so I feel like none of them will really take this seriously.  They all keep saying it's just my fibromyalgia.  It was only when I started the shaking episodes at night that they decided I needed to go back and see a neurologist.  Should I wait and see a regular neurologist before pursuing an MS specialist, or what?

I have also found a female neurologist at the Wesley Neurology Clinic who has a special interest in MS among other things.  I wonder if a female doc would be more inclined to really listen to me this time and not just think that I am whining.  I know that sounds really sexist, but I just haven't had much luck with the male docs.

I know I said this was going to be a quick question, but I do tend to run on (Sorry!).  I really value your opinion and would love to hear what you have to say.  Thanks!

No, I do not  think you are jumping the gun.  When the question comes up it must be answered.  Part of the function of MS specialists is to be as effective at "ruling out" MS and then determining what it is, as they are in making an MS diagnosis.  They have to be well versed in all the things that mimic MS.  I would say jump for the chance to see someone at St. Judes!

Try to take the time to write a time line of your symptoms and problems as well as you can put one together.

When they appeared, what evaluations were done.

Gather together your medical files from the doctors who have evaluated you.  Get all the lab, imaging and other tests and put them in chronological order.

Most important  -  Try NOT to be too dramatic in your descriptions.  Write them in clear sentences. Use short paragraphs for each type of symptom you have.  If you are too wildly descriptive or appear out of control with anxiety, there is a tendency to discount some of what you say.  It isn't fair, but it will give you the best chance of being heard all the way through.

Have a list of all the meds, supplements that you take.  Also a separate list of the ones you took previously for these symptoms.

This preparation will serve a few purposes.  One it will clarify in your mind what you want to have the neuro know and give you a list to refer to if your mind goes blank like mine does sometimes.

Give a copy of each of these lists to the neuro.  It will help them guide and prompt their questions.

It will also be useful in the future.  In the meantime it will give you something important to do to keep your mind from turning over in anxiety.  It is a useful early step in taking control of finding the diagnosis.

How does this sound?  Quix

Great advice!  Thank you so much.  My doctor's office has already scheduled me with the female neuro I was telling you about, but if I am not satisfied with what happens there, or there is still a question, I will contact St. Jude's.  I am working on the timeline right now, and your are right, it is helping.  Thanks again for everything.

Hi, Jenn, I'm so sorry you're so frightened.  I soooo know how it feels.  Are you aware of the implication of the symptoms worsening right after becoming very warm (like a hot bath)?  Is that what made you more scared?

Remember that most people with MS live with very manageable disability and that less than 25% end up permanently in a wheelchair.  It is not a death sentence.  And to a huge extent, I think the time spent in limbo - not knowing - is much worse than after a diagnosis and having something to actually understand and contend with.

Being young, female and having early visual and sensory symptoms is - in general - a sign that (if this is MS) you will tend to have a milder course.  

I wanted to say a few reassuring things, but now I will figure out how to navigate the MS Society site and get to the list of MS specialists.  Be right back...Quix

Hi, Debs!

Just wanted to let you know that several hours after I posted the last comment I took a hot bath.  About 20 min after that a sat down to relax and watch TV.  My family was finally asleep.  I then felt a strange sensation wash over me.  My hands were tingling even more and going numb and it seemed to be travelling up my face and eventually my tongue started feeling numb.  I very heavy like I was sinking into the ground and couldn't find the energy to even pick up my arms (they felt very heavy).  I called my mother because I got really scared.  I was having to pause a lot during my sentences and think about some of the words I was trying to say.  I still feel a little like that, but not as bad.  My hands are staying numb constantly now.  I am really scared.  

Also,  I tried looking up a specialist on that website, but couldn't find where to go.  I found the website, but there was no link to search for a specialist.  Can you help?

When all or many of the symptoms flare up after a bath/shower/sauna/hot room etc.  it is a classic reaction in MS.  Once the body cools down, the symptoms usually subside.  In the old days before CT's and MRI's the diagnosis of MS was made sometimes by placing the person in a hot bath and looking for an immediate exacerbation of the symptoms.  It was/is called the Uhthoff Symptom.

Sometimes I love a long, hot shower.  When I take one I also have that incredibly weak muscle reaction that you describe.  I just sink into my recliner and let it pass.  It does no harm - that, is it doesn't cause neurological damage or increase your rate of disability.  In fact, after my last hot shower I had a completely new symptom - tingling in my right foot and ankle.  I wonder if that is going to be my next symptom....it will be interesting to see.

In these exchanges, I am talking to you as if I had "diagnosed" MS in you.  We both know I can't.  It's just that your description is so very similar to what is often found.  Keep that in mind.

That said, the more I was "convinced" that it was MS, the calmer I felt.  It wasn't that I wanted to have MS, but it was obvious that I DID HAVE SOMETHING and the closer to understanding what it might really be, the easier the symptoms were to handle for me.

I looked at the MS site.  I forgot that I had to go to my local chapter for the list of specialists.  I went to yours, but they didn't seem to publish a list.  I would contact them and ask.  Here is their link:

http://www.nationalmssociety.org/site/PageServer?pagename=TNS_homepage

You might also contact the medical center at Vanderbilt to ask if there is an MS Clinic there.

Stay in touch, Quix

Yes, that is part of what made me frightened.  It was also just the feeling of not being in control of my body.  I can handle the numbness in different areas of my body, but this time it almost felt like my whole body was becoming numb and paralyzed.  The only thing I can equate to it is when I was pregnant with my daughter and had to be on Magnesium two different times for preterm labor.  That feeling of not being able to really do much in the way of movement or reflexes because your body has just slown down to almost a stop.  Then I had the tingling and numbness on top of that as well as the cognitive problems.  It just seems as if things are getting worse by the day and I feel like I am going crazy!  I told my mom that I almost hope I get a diagnosis of MS because then I know what it is and can do something about it.  I am past the point of wondering if there is something wrong.  I know without a doubt there is.  I just worry we are never going to figure it out.  I did just get back from having my CT scans done, so atleast I am one step closer to finding something out.  I know you can definitely relate to how I am feeling.  Sounds like you have had some serious battles to deal with.  I am glad you are able to get on this site and still help people in some sort of way, even if you are no longer practicing.  I think keeping the mind active is the best thing any of us can do.  I want to thank you again for the encouragement you have given me.  Please let me know what you come up with on the MS website.  If it helps, my zipcode is 38018.

Thank you so much for your posting.  I love this forum and how helpful everyone on it is.  I am sorry to hear about your debilitation.  I have a great fear that I am going to finish nursing school and then not even be able to practice because of my medical problems.  

I am definitely going to ask for all of the tests.  I am already scheduled to see a certain neurologist on the 1st, but now I am worried I should see someone different.  My problem is that I have seen a neurologist in the past from each of the two largest neuro clinics in Memphis.  The one with the first group I could not stand, and the second one just didn't really get much done and just told me I have fibro.  Now my docs are trying to set up a neuro appointment for me and cannot set me up with any other doc within either one of those practices because they don't like you to switch within the practice.  I definitely do not want to see the first neuro, so I am stuck seeing the second one again.  I did find that there is a great neuro with the first practice that does specialize in MS, but ofcours I can't see him.  I hope I haven't confused you with all of this!
I will definitely look on that website though, and see if there is anyone not involved with those practices.  

As far as recording the history of my symptoms, I thought I would just use the majority of what I originally posted on this forum as my list of symptoms and timeline of flareups.  Do you think that would be sufficient?  

I am having a CT of my chest and head done tomorrow because of the weird shaking/vibrating feelings I have been experiencing.  This was not set up by my neuro, but by my rheumatologist.  I don't think it will help to tell me anything about MS, but it will help to rule out heart problems and tumors, etc.  

I am feeling really weird right now.  I decided to take a little nap, and as soon as I laid down I started feeling the buzzing feeling all through my body and my hands started tingling and going numb.  It lasted throughout the nap, and now that I am sitting up is still going on.  I am able to type if I really concentrate, but my fingers feel like noodles.  It seems that lying down sometimes brings on these symptoms.  Have you ever heard of that?

Well, thank you again for all of your advice.  I wish you the best with your illness as well.  I will keep everyone posted as to my results and appointments.

Hi, I'm new to this forum, but have been active recently over on the Neurology Support forum.  One of the posters here invited me to join you.  I am an MD, disabled by two autoimmune diseases.  One of them is MS which was diagnosed two months ago.

Your neurological symptoms (the ones you feel are different from your fibro) sound very much like MS.  I definitely agree with Debs that you need to push for the entire, sequential work up for MS.  In the face of extensive problems, no one can just dismiss "little white spots" on the MRI!!!  That was done to me and delayed my diagnosis by more than a year.  That those spots disappeared is also consistent with MS.  Lesions of demyelination appear and then resolve.

As Debs urged, you need sequential MRI's of the brain, C-Spine and of the thoracic spine WITH CONTRAST.  You need an ophthalmologic exam and if that is normal, "visual evoked response" test to look for signs of past optic neuritis  which is the most classic problem in MS.  You do need a spinal tap which should be sent for all the ususal things but should include an MS panel.

If I am saying things you already mentioned I'm sorry.  Today is a bad day for my vertigo and reading is difficult because my eyes are jumping around.

If you are in the States, go to the MS Society website and look up MS specialists in your area.  Go get a second opinion.  First write up your med history and your work-up results in the clearest timeline you can.  The urgency in getting a diagnosis is that MS can be helped in a significant number of cases by "disease altering therapy".  It won't improve what has already happened, but it can slow the rate at which you accumulate disability and reduces the rate of relapse.  It takes 6 to 12 months to see any slow down.  Also the MS specialists are better, in general, at ruling OUT MS and figuring out what is more likely the cause.

During pregnancy the immune system is relatively suppressed so that the mother does not "reject" the baby (one half the baby's tissue type is different from the mother's - having come from the father).  After delivery the immune system resumes it's full function, and often that precipitates an attack of MS.

And do try to relax, the anxiety only makes all the symptoms worse.

Keep asking questions.  That's what the support forums are for.

Best wishes, I hope this forum can indeed, turn out to be a source of information and for support.  Quix

Hi Jen,

Once again sorry for the delay, I have had my familly staying with me for the last 10 days, and it has been  total chaos - as I am sure you can imagine !! Anyway this is my email - and please please feel free to email whenever you like - I will help you as much as I can.  I really can't see the problem with the Doc's giving you antidepressants - but we will chat more about that on email.  

deborah.***@****.


Take care Jen - I'm here for you whenever you need me.

Debs.

Debs,

Thank you so much for writing back!  I feel so much better talking to someone who has been through the same things.  I really hate to hear what you have gone through, but it sounds like you are handling things the best way possible.  I will really take all of your advice to heart, and I will definitely push to get those tests done.  I agree that I need to destress, it is just so hard.  I really want to get back on an antidepressant, but for right now the docs have me off of everything until we figure out what is wrong with me.  The major thing that stresses me out is that I am a prenursing student, and I don't want this to effect me getting into clinicals.  I have to be checked out and cleared by a doc before I can be admitted into the program.  I would love your email addy so that we could chat some more and I could get info from you.  I would also like to share with you the results of my neuro visit.  Thank you so much for your correspondence, and please keep in touch.

Jennifer

Right then, firstly I can appreciate what you are going through without having a dx.'  I'll tell you a little about myself first OK?

I woke up one morning and jumped into the car to go to work - looked left and found I had double vision.  I kept quiet about it with my husband as I thought that it was because I hadn't been sleeping very well with the pressure of work ( I am a Doctor of Chemistry), it went on for 3 days and was gradually getting worse, so I metioned to my husband after the 3 days - went to the Doc's and demanded to see a neuro.  We lived in the UK then so I paid and went privately.  The neuro I saw was one of the best in the UK at that time - this is 7 years ago now - he gave me a full body examination and told me to have an MRI.  He wrote to my local Doc's and told them just by looking at me he could tell that I had a demylination disease (MS).  I had the MRI - waiting for the results I had a terrible feeling that something was wrong with me - so one night I went to ER where they told me that I had a migraine  - HAHA - so I got off the bed told them what I thought of their dx and waited another 2 weeks for the results.  Went back to the Neuro who gave me the results - I was devasted.  He said I had approx 11  *white spots*  these are called lesions - and basically sent me on my way.  I had to deal with the dx on my own with my husband who was like a brick for me.  It took me 6 months to come to terms with it.

I now live in France where the healthcare system is second to America - but without the problems of Insurances.  I am due to start Copaxone in a month and today I start my first course of steroids due to my blurred and double vision that has been going on for several months now.  I now have more lesions and on my spinal cord too :(

If I have bored you with my story I am sorry, but I pushed and pushed to get a dx and it only took me a month to get the results which is what I want you to do also OK?

So what I am saying to you is like I said I am NOT a medical Doctor, but you need to push your neuro to get another MRI, LP and EVP.  Push HARD for the correct results, if one neuro doesn't cut it then find another one.

I have a good idea that your symtoms are very indicative of MS, but I am in no position to give a dx just like that - it's just that I know a lot about MS and how it can manifest itself - especially after giving birth.  To have these sensations that you have been having lasting for 3 months or so is a good indication that something is not right.  I am not trying to give you scare tactics - but with your heart pounding as well means that you are under stress because of the worry of not having a correct dx - which is not good for MS.  That is anxiety - could well mean that you need to have antidepressants to up your seratonin levels in the brain as with MS always very low

You need to de-stress and relax more, get plenty of sleep - you would be suprised how well a short nap in the day can do wonders for you.  Find time to excercise that is good also.

Like I said I am research Doc in Chemisrty so it's my job to find out about various things and this has been one of the items I have done in my spare time at home.  

If you would like my email addy let me know and I will chat more with you and send you links to some excellent websites.  MS is NOT the end of the world believe me, it's another door opening and you get to appreciate life a whole lot more.

My mantra every morning when I wake up is that "I will put my best foot forward and carry on", make it yours too.

Please take care and let me know.  BTW I have now had MS for over 7 years now ( and probably a few years before that when I look back and various things that have happend to me ) and I cycle 10 miles a day - play with my 4 year old son -make the most of life.

And as for your *white spots* no that doesn't answer any questions for me and it shouldn't for you either.  The cyst that you have I have that too - it is VERY comman in all people with or without MS.  I can feel your frustration and worry please stay calm.

It's your health and nobody but you can do anything about it but you.  Many women are dx with MS after childbirth that is also vey comman.  Like I said let me know if you want my email addy, in the meantime take care and DO NOT give in on getting a dx one way or the other - and also please remember I am not a Medical Doc.  But I hope that I have given you some courage when you have you appointment this week.

Debs

Thank you for your response.  I am trying to stay calm about this, but I am sure you can understand the frustrtation of knowing something is definitely wrong with you, and you can't seem to get the proper diagnosis.  I am also loosing a lot of sleep because I am waking up in the middle of the night having episodes about every ten to fifteen minutes (even on sleep medicine).  I am waking up jumping, jerking, and vibrating, and my heart races.  One time last night I woke up lying on my side and my heart felt like it was galloping and the force of it was shaking my whole body.  Luckily I had a holter monitor on that had been ordered by my rheumatologist, so I am hoping it caught something on that.  

The times that I had the MRI's they did contrast the first time but not the second time.  The first time was when they found the "small white spots" (is what he called it) on either side of my brain that he said were nothing to worry about.  He said they could be from having bad migraines in the past or from having diabetes that had been out of control for a while.  I told him I had never had migraines before, and I was always borderline diabetic and my sugars had never been out of control.  He said it could be other things that  we don't know about, but not to worry.  He said he didn't think I had MS, but he could do a nerve test to see what the numbness was about.  He was a very old, set in his ways doctor with a horrible bedside manner, and I didn't like him.  I never followed up with my visit to him, and soon after my symptoms went away.  My relapses of symptoms usually last anywhere from two to three months.  The second MRI I had was with another neurologist and it showed a cyst in my sinus region, but nothing else.  Again, not much was done, and a month later the symptoms went away.  Everyone said that it was maybe a phenomenon that happens to some women after they have a baby, and that since the symptoms went away, don't worry about them.  It is now a year later and the symptoms are back full force!   They are really effecting my quality of life this time, and I just can't keep going on like this.  There are new symptoms now along with the old ones, and we can't discount these to having a baby, cause my husband and I can no longer have children.  I just feel like I haven't found a doctor that is really willing to take these symptoms seriuosly and do the test that need to be done to get to the bottom of things.  Just because the symptoms go away, as you know, doesn't mean they aren't going to come back.  

To answer your other question, yes I felt fine during my pregnancy.  I did have difficult pregancies with both of my babies, but did not experience any of the symptoms I have previously listed during the pregnancy.  They seemed to all come on right after giving birth both times.  Everyone said maybe it was just from sleep deprivation.  The sad thing is I actually started listening to everyone and thinking that maybe I was crazy until this third onset happened.  There is nothing that we can find to attribute this new flare up of symptoms.  I am not on any medication except an occasional Ambien CR 6.25 mg when I can't sleep.  That doesn't seem to effect whether or not I have the symptoms during the night.  

I think that answers all of the questions you had for me.  Thank you again for trying to help.  I will take any advice you've got for me!

Firstly Jen you need to calm down.  If this does prove to be the case that you have MS being stressed will do you no good as this makes symtoms and relapses much worse and prevelant OK??

You need an EVP and a LP if they couldn't find anything on the MRI.  Did you have the contrast agent with the MRI's???

I am no Doctor but I do have MS and to have relapses after childbirth is VERY comman, did you feel well during your pregnancy - as this is normally the case with all those hormnes racing around your body :)

I don't understand why if they found lesions on your brain that they put that down to migraines can you give me more info on that??  

It is possible to have a negative MRI with MS for some strange reason, but there are new MRI machines out and they are much more effective.  I just had one done and it was brilliant - it showed the professer everything and it was all on CD ROM.  If you do have another MRI make sure they do one of your spine as well.

Sometimes to have a dx is very difficult as it's a crafty disease and makes a neuro's job quite tricky to dx.  

How long do your sensations last for???  We can't call it MS just yet because we are not Doctors - give me more information and I will try and help you some more OK??  Bear in mind MS *relapses* last for weeks or maybe even months, not just the odd 5 or 10 mins.

I might also mention that in past blood tests I have tested positive for Epstein-Barr virus, positive ANA, elevated RH factor, elevated sed rate, slightly elevated lupus titer.  Rheumatoid arthritis was initially my diagnosis but bone scans have shown no degineration in my joints except for some osteoarthritis,  and I did not respond to RA treatments including Enbrel.  They also do not seem to think I have Lupus.  Many autoimmune diseases run in my mother's side of the family and her mother had trigeminal neuralgia.  She died during a surgery to correct it, so they never got to really find out what caused it.