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I can't seem to get a reall diagnosis!
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I can't seem to get a reall diagnosis!

After reading the article “So They Think You’ve got  Conversion Disorder” on here I was finally motivated to seek the opinions of the REAL people rather than another ill informed doctor.
When I was 18 I experienced unexplained Seizures for a few days.  I was in the hospital having tests done for a week and in the end an entire team of Neurologists couldn’t explain them.  Years later I began to experience a myriad of symptoms and am experiencing these symptoms for the second time.  The First episode lasted for 3 years starting when I was 26.  I was having an electric zap feeling going down my left arm, nerve twitches, extreme fatigue, numbness in my right thigh, limbs would suddenly fall asleep, and more.  I even had a week of extreme pain in the right side of my face that my dentist couldn’t explain.  The pain subsided with no explanation.  I saw a Neurologist who diagnosed me with Somatoform disorder on the first visit without running any tests.  After dealing with the shock of that diagnosis my husband and I dismissed his opinion and I went on to be diagnosed with Fibromyalgia.  My symptoms went into remission after extreme diet changes and maintaining that diet (Gluten free) since then.  Last year at the age of 31 I was diagnosed with Trigeminal Neuralgia after experiencing the excruciating pain again this time for months.   I found a great Neurosurgeon who performed MVD on me in May 2012.  I still have some pain on that side of my face but it is very infrequent so I consider the surgery a success.  My recovery was very difficult and just as soon as I started to feel better my previous symptoms started to return along with pain on the Left side of my face.  I almost couldn’t believe this was happening again!  I went back to the Neurologist that diagnosed my TN originally despite the fact that I didn’t like him which caused me to seek a second opinion from the Neurosurgeon in the first place.  My husband hadn’t met the diagnosing Neurologist but felt that it would be good to see him since he knew me.  The problem was that other than my previous TN diagnosis he didn’t know my history and wasn’t interested in hearing it.  He didn’t allow me time to fill out a history or family history which is especially important because my Dad has MS.  I started to explain that I was having TN like pain on the Left side of my face now accompanied by nerve twitching.  He seemed annoyed and tried to shut me down by saying “TN doesn’t cause nerve twitching.”  He went on to do a physical exam in which I showed muscle weakness on the left side and when he touched the tuner to my nerves my whole limb would convulse.  I almost fell over during the tests with my eyes closed.  He reluctantly ordered some tests along with new MRI’s that my husband and I asked for.  The only abnormality in the tests was a few bulging discs in my spine.  The doctor had been hinting at anxiety and depression, and sure enough that’s what he diagnosed me with despite the fact that I’m not depressed.  We even saw that in his records that he noted on the first visit back to him about these symptoms “If not Myasthesias Gravious diagnose Anxiety.”  He already had a back up plan.  We left his office so frustrated and discouraged!  We have had a couple months to recover from the negative experience with that Neuro and are trying to decide what to do now.  Is it worth it to get a spinal tap to further rule out MS since that is the only explanation for all of my symptoms and history?  I have heard so many stories of people who go for years before seeing lesions and we can’t help but think that might be what’s going on with me.  My husband assures me that I’m not crazy and that he and anyone that knows me can testify that I’m not depressed.  I’m a positive thinker and I just want the energy and ability to take care of my family and live my life.  
Tags: TN, siezures, ms, MVD, Family History, somatoform disorder, Conversion Disorder
24 Comments Post a Comment
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1831849_tn?1383231992
Hi Cometgirl - Sorry to hear you seem to be stuck on a diagnostis merry-go-round. Many of our members have difficulty reading large, solid blocks of tex. I've taken the liberty of breking your post up so that all can read.

Kyle

After reading the article “So They Think You’ve got  Conversion Disorder” on here I was finally motivated to seek the opinions of the REAL people rather than another ill informed doctor.

When I was 18 I experienced unexplained Seizures for a few days.  I was in the hospital having tests done for a week and in the end an entire team of Neurologists couldn’t explain them.  

Years later I began to experience a myriad of symptoms and am experiencing these symptoms for the second time.  The First episode lasted for 3 years starting when I was 26.  I was having an electric zap feeling going down my left arm, nerve twitches, extreme fatigue, numbness in my right thigh, limbs would suddenly fall asleep, and more.  I even had a week of extreme pain in the right side of my face that my dentist couldn’t explain.  The pain subsided with no explanation.  

I saw a Neurologist who diagnosed me with Somatoform disorder on the first visit without running any tests.  After dealing with the shock of that diagnosis my husband and I dismissed his opinion and I went on to be diagnosed with Fibromyalgia.  

My symptoms went into remission after extreme diet changes and maintaining that diet (Gluten free) since then.  Last year at the age of 31 I was diagnosed with Trigeminal Neuralgia after experiencing the excruciating pain again this time for months.   I found a great Neurosurgeon who performed MVD (Microvascular decompression) on me in May 2012.  I still have some pain on that side of my face but it is very infrequent so I consider the surgery a success.  

My recovery was very difficult and just as soon as I started to feel better my previous symptoms started to return along with pain on the Left side of my face.  I almost couldn’t believe this was happening again!  I went back to the Neurologist that diagnosed my TN originally despite the fact that I didn’t like him which caused me to seek a second opinion from the Neurosurgeon in the first place.  

My husband hadn’t met the diagnosing Neurologist but felt that it would be good to see him since he knew me.  The problem was that other than my previous TN diagnosis he didn’t know my history and wasn’t interested in hearing it.  He didn’t allow me time to fill out a history or family history which is especially important because my Dad has MS.  

I started to explain that I was having TN like pain on the Left side of my face now accompanied by nerve twitching.  He seemed annoyed and tried to shut me down by saying “TN doesn’t cause nerve twitching.”  He went on to do a physical exam in which I showed muscle weakness on the left side and when he touched the tuner to my nerves my whole limb would convulse.  I almost fell over during the tests with my eyes closed.  He reluctantly ordered some tests along with new MRI’s that my husband and I asked for.  

The only abnormality in the tests was a few bulging discs in my spine.  The doctor had been hinting at anxiety and depression, and sure enough that’s what he diagnosed me with despite the fact that I’m not depressed.  We even saw that in his records that he noted on the first visit back to him about these symptoms “If not Myasthesias Gravious diagnose Anxiety.”  He already had a back up plan.  

We left his office so frustrated and discouraged!  We have had a couple months to recover from the negative experience with that Neuro and are trying to decide what to do now.  Is it worth it to get a spinal tap to further rule out MS since that is the only explanation for all of my symptoms and history?  

I have heard so many stories of people who go for years before seeing lesions and we can’t help but think that might be what’s going on with me.  My husband assures me that I’m not crazy and that he and anyone that knows me can testify that I’m not depressed.  I’m a positive thinker and I just want the energy and ability to take care of my family and live my life.  
Tags: TN, siezures, ms, MVD, Family History, somatoform disorder, Conversion Disorder
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3079363_tn?1363277315
Hi!
I'm sorry that you are going through all of this and hope you get some answers soon!

Practically, I'd suggest you see an MS Specialist. It seems that regular neuros and radiologists are not really skilled in reading your MRI's. I was left untreated, miserable, and scared and made to feel like a hypochondriac for months. My old neuro said, "You can't be having problems there, there are no lesions on your MRI".

You know your own body more than anyone else. I went to an MS specialist who is also a neuroimager and was diagnosed within the month. He showed me on my original scans the Dawson's Finger's and other lesions.

I wouldn't waste anymore time with this guy! Blessings to you and your family!

Colin
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738075_tn?1330579444
Yes, what she said!!  Get a second opinion!!  This guy you saw sounds like an absolute doofus!  See also the posts on "Advocating for Yourself" and "The Importance of the Timeline".  These will help you set your appointment with a good MS specialist.
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429700_tn?1308011423
I third what was said.  I'd seek an opinion from another neurologist.  I would say an MS specialist.  Not all neuros are the same.  My first neurologist didn't run any tests except for a MG test and relied on an old open MRI test completed two years prior that was too weak to pick up MS lesions--even after I had told him the huge list of symptoms--not to mention my sister's diagnosis with MS.  

Interestingly, I had a diagnosis of fibromyalgia, too. I only had one trigger point.  The second neurologist had said that this was a wastebasket diagnosis for me.

You probably need a neurologist that specializes in MS.  There are other tests besides a spinal tap, too, that could provide information.  

I hear terrible stories about some people on the forum going to MS specialists, but I am very, very impressed with mine.  I am very happy to have switched from my regular neuro to the MS specialist.  You may want to do some research into finding a really good one and hear what other patients say about the other doctor before setting up an appointment.  

I hope you're not let down again... I know that sometimes it can take years before getting a  real diagnosis.  It may not be MS, but you deserve better treatment that what you've gotten and to get some sort of answer as to what it is.


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3054080_tn?1358726456
Hi and welcome!

I am one of those who had a bad experience with an MS specialist.

To be fair, after having some pretty scary symptoms, I went to just the regularpcp. I was referred to this MS specialist. I did NOT request an MS specialist. Well, he basically blew me off. I saw him for about 10 minutes utes, no neurological tests, and he said that taking a muscle relaxer at bedtime wouldrelieve my symptoms, and the numbness in my right arm and hand were carpal tunnel. He was quite rude and I got the impression he thought I was wasting hispprecious time.

I did agree to the EMG and another test they do during the same session and guess what? No carpal tunnel. My results pointed toward something neurological.

I guess my point is, sometimes being referred to or going to an MS specialist early in the process doesn't bode well. They feel there are people worse off who deserve their time.

I hope you find someone, MS specialist or not, who will take the time to look at your timeline and evaluate you aand give you the attention necessary to at least have some sort ofplan ffor follow up.

All the best,
Minnie :)
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Avatar_f_tn
Thanks Everyone!

  I'm definitely not myself these days and looking at it I can't belive I didn't seperate paragraphs, so thanks again kwarendorf for doing that for me.  

  It's so nice to hear all of you back up what my hubby and I were thinking.  Regaurdless of if or how I am diagnosed it's reasuring to hear others who understand our situation.  We had thought to see an MS specialist and even found a few in our area.  Two major things are holding us back, #1 The fear of another very negative and bad aexperience and #2 We need a referal from another physician and my medical history.  

  The fear I can handle.  I'm a big girl and realize that I'm not going to walk in and get a diagnosis now or anytime soon.  I really am just looking for someone who is good at what they do and will take the time to look as my history and not draw a made up "Conversion Disorder" diagnosis just to get me diagnosed with something.  

  The referal is different.  When I left the Neurologist a couple of months ago I took my records with me.  That is the only way I even know that I had bulging discs in my spine because according to him after we questioned him 3 times about the MRI's he insisted "they showed no abnormalities."  The report from the Radiologist clearly stated the bulges.  My Chiropractor ;(who I love) doesn't think that they are a problem but also couldn't believe that the Neuro didn't even bother to tell me.  To top off finding this inconsistancy in my chart we also found that he had me listed as taking Lyrica at the time of visit which I clearly stated right off that I was no longer taking thanks to the MVD.  He dated things incorrectly, spelled my name wrong, etc.  

  On one hand at the end of the repot from my last visit it suggests getting a second opinion, but that is listed only after a diagnosis of Conversion Disorder.  On the other hand I feel as though an explanation needs to come with the paperwork to explain and clarify.

  In an effort to be proactive I'm also wondering about other tests that can be done?  My Dad was diagnosed in the 60s with a Spinal Tap and neurological exam.  He has had MRI's since that time that show lesions but not until about 20 years after his first attack.  Are there tests other than the Spinal Tap that I can look into to help diagnose or rule out MS?  We really would like to know if we are barking up the wrong tree but we can't seem to find anything else that fits that I haven't been tested for.  Not having a Neuro take us seriously has us in pause.  We would love to take MS off the table but until we feel like a doctor has actually exhausted their efforts we are going to have a difficult time doing that.

Thanks again for all your help!!!!
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1831849_tn?1383231992
Hi CG - Like your father, my first MRI's were done 20 years after my first relapse. Also like your father my diagnosis was primarily based on my clinical exam.

The dx of MS is largely a clinical diagnosis. All tests and MRIs are done to either support or refute the clinical diagnosis. Lesions on an MRI, in the absence of clinical symptoms would not likely lead to a dx of MS.

The standard list of supporting tests likely includes:

MRI's of brain and c-spine done both with and without contrast.
Evoked Potential tests
Blood tests to rule out MS mimics like Lyme disease.
LPs to look for oligoclonal bands in the CSF that are not present in a blood sample drawn at the same time.

The closest thing there is to a dx standard for MS is the MacDonald Criteria.
Take a look. It can give you a pretty clear indication of what combinations of results will lead to an MS dx.

http://emedicine.medscape.com/article/1146199-workup#aw2aab6b5b2

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Avatar_f_tn
Thanks for the info kwarendorf!

  My Dad talks about his diagnosis of MS taking a long time and being so confused while he waited, it was 6 weeks and I'm going on 6 years.  

  I am interested in getting more tests done if they will help.  My GP has taken a lot of my blood and tested for everything he can think of including vitamin deficiencies and Lupus and nothing that he has found explains my situation.

  I have been reading what I can about Advocacy, and Timelines.  I was told by a friend to make a Timeline way back when this all started.  I took it (only about a page at the time) to the First Neurologist which he used against me in the diagnosis of Somatophorm disorder.  I was so upset and traumatized by the experience I stopped keeping any notes, I wish now that I hadn't.  My husband is very helpful in reminding me of things I forget so I plan to get something put together with his help.  If they are going to ignore my real symptoms and use Conversion Disorder to get me a quicky diagnosis then they likely will with or without that.  

  Another question for anyone that might know.  When this was first happening during the onset of symptoms 6 years ago my GP/Internist tested my SED rate and it came out as 120.  I was told that it should have been under 20.  I know this is a test to check for inflamation (inflammation) anywhere in the body but at the time I didn't have any infection, or illness that we knew of other than these odd unexplained symptoms.  When I later had my SED rate tested it was 1.  Has anyone else had an experience like this or maybe know more about it than I do?  

I really appreciate everyones help and I welcome any advice!!!
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429700_tn?1308011423
I've had an elevated sed rate, this is what prompted my GP to refer me to a rheumatologist. I also had a positive ANA test and a positive C-reactive protein.  The doctor was thinking it was lupus, but the rheumatologist said that the ANA wasn't high enough to be lupus.  In fact, when repeated, the ANA test was negative.  My GP keeps repeating these ANA tests on a yearly basis.  I've noticed that they've fluctuated from negative to in the 300's.  I have done a lot of research in regards to lupus because for years, I was convinced this is what I had.  I hadn't seen a neurologist, so I hadn't anything else to consider at that time.

From what I've researched, many of symptoms of lupus overlap with MS.  Have you had other blood tests?  Lupus can affect the CNS--this is called CNS lupus which can be very serious.

I do think it's important to see someone that is knowledgeable about MS, since your father had it; however, be open to other avenues like rheumatological.  I don't have a family history, other than my sister with the disease, but every single female in my family has an autoimmune disorder.  MS with your father opens the possibility of you having an autoimmune disorder of some type.  

It's too bad you have had such a terrible experience.  There's lots of us that have gone through similar ordeals.  

I've had TN before, and it's not fun.  witches are very, very common when people are tired or stressed out--especially in the eyelid in the normal population.  It is strange, though, that I've never noticed so many twitches in other people.  I have a lot eye twitching and cheek twitching and this actually is a daily occurrence for years now.  Some days are worse than others.  For me, I would have to say it does have to do with MS.  I don't think daily twitching is normal.

I know you're frightened, I would be too, but find someone who is competent at what they do.  I do think an MS specialist, still, would be my recommendation.  But please "shop" and research them.  I found by reading posts from people in my area, a wonderful MS specialist.  Actually, all of them are great in this hospital group.  Look on-line to see if they have been cited in research . . . Look online for reviews, read posts here, . . .  

Your GP may be able to refer you to both an MS specialist or a rheumatologist (you probably need to rule out two things).  You make a strong case--especially with your father having MS.  Not that you do, but do not sound open-minded to this conversion disorder thing.  You've had evidence that does not support this diagnosis, i.e. high sed rate, bulging discs in neck (which may support a rheumatological disease, TN diagnosis, fibromyalgia, a family history.

I have some questions for you:
1.  What was the strength of your MRI?  Was it done with MS protocol?  This is very important.  The MRI machine strength does make a big difference.  If it's done one a machine less than a 1.5 or without MS protocol, lesions can be missed.  This is why I say that an MS specialist may be helpful.  
2.  What other blood tests have you had?
3.  What autoimmune diseases have been ruled out?
4.  Have you been tested for Lyme Disease?
5.  Have you been tested for Celiac Disease?
6.  Have you been tested for lupus, Sjogren's, or other autoimmune disease?
7.  Has your thyroid been checked?

The neurologist you saw just wasn't competent.  I have never been to a neurologist, or another doctor for that matter, that didn't ask for family history.  This is inexcusible.  



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429700_tn?1308011423
"twitches" not "witches" LOL  
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Avatar_f_tn
cometgirl-

Our stories are quite similar! I too have bilateral TN, hemifacial spasms, was long ago charted as having conversion disorder, my sed rate and CRP are chronically elevated (neg ANA so far), also diagnosed fibro even though I only have 1 tender point.

I am finally at Mayo, where I have been clincally dx with MS, and just completed tests to rule out other things- basically confirm or toss out MS. So far, nothing else can explain my symptoms. This neuro at Mayo is my 7th neurologist. Not even my local neuro believed me, so I kept pressing on.

I say this to support what others are saying about finding another opinion- heck, I found 8 total before one would finally consider ALL the evidence. It IS hard and discouraging, and I certainly understand the fear. Being your own advocate first and foremost is so crucial. Will keep you in prayer!

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Avatar_f_tn
Wow!  Everytime I read new comments on here I feel so validated which is amazing after my negative experiences with doctors.  Thanks so much for your concern!

To answer your questions Deb62-

1.From what I can see in my MRI's there are about 16 scans total including contrast and non-contrast.  Some of my brain and some Spine and 6 of them are T2 weighted.  The rest either say T1 or other abreviations that I'm clueless about.  I'm not sure what MS protocal is?

2-6.I'm currently in the process of getting my records from my GP/Internist so that I have a history of my tests.  Without looking at them I can't be positive of all the tests that he ordered but he tested me for Lupus, Lime disease, and anything else he could think of.  The only abnormal test was the High SED rate.  

I did see a Rheumatologist about 5 years ago and she is the one that diagnosed me with Fibromyalgia without any Tender points.  I wasn't very happy about that and knew that it wasn't the correct diagnosis.

I am definitely intolerant to Gluten and thought that was the cause of all of this.  My issue now is while avoiding Gluten so strictly and eating very healthy all my symptoms have come back along with some other not so fun additions.  I feel like when I went Gluten Free I went into remission of symptoms and that having MVD caused me to relapse.

7.I have had my Thyroid checked twice since this current relapse and everything is within normal range.  Of course we were hoping that it would be my Thyroid because that would have been managable.

As for my twitching, my husband and I have tried to find some correlation between the twitches and stress or anything that would explain them.  It's kind of funny because before all of this I remember thinking how wierd it was to have a sudden twitch and they did usually seem to be in my eye and probalby were occuring when I was stressed.  Now I rarely have twitching in my eye.  I have daily twitching in what I think are nerves but it could be muscle, I don't really know the difference.  The twitches occur in my calves, thighs, shoulder, palms, lips, nose and more.  They seem random and I've had episodes where something will twitch for about 24 hours or so only stopping for brief periods and then starting right back up. My husband actually started joking around when he would see me twitch and say "you must be really stressed out."  It's our own little conversion disorder joke that's especially funny when we are doing relaxing or fun things like watching a show, or decorating for Christmas, that kind of thing that is the least stressful of all.  Sometimes the twitches even wake me up out of my sleep.

Thanks eham05 as well for your comments and it's nice to hear that you are able to get some answers.  I am actually going to see my Neurosergeon tomorrow to pick his brain a little.  I'm hoping he'll have a real opinion or will refer me to someone that might help.  He was great and knows better than anyone that I have real, true TN and that despite what some doctors might think there was nothing to be seen until he litteraly drilled a hole in my skull.  When he gave me his opinion about my TN originally he sat and talked with me and my husband for 45min. after we had already seen his nurse and nurse practicioner.  I'm confident that he'll give me some time even if it's just to talk out what to do from here with another doctor.  

Another question for any of you helpful people who might know... I often have limbs fall asleep while sitting, walking, sleeping, etc. but now I'm often waking up with half of my hand completely asleep, or to better describe it, completely numb but I'm able to move it.  Is this a common MS symptom?
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3054080_tn?1358726456
Hi, I don't know if that is common for those who have MS but that describes my right hand (and lately my left) perfectly. I also have the "half asleep" thing happen with my right leg at work.

All the best, Minnie :)
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Avatar_f_tn
Cometgirl-

YES- ALL the time my limbs & flank areas fall asleep, even while using them at times. This is new over the past year, but it may be due to muscle tightness, not necc originating from nerve issues- at least for me. I need frequent myofacial release massages and I haven't been in a year so that could be the cause!

On a side note- not muscle related- in Dec I had a week where my girl parts and thighs kept going numb just out of nowhere. I plan on asking the doc about this in March.

Are your limbs cold at the time they fall alseep?
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Avatar_f_tn
Yes, before things fall asleep they feel cold to me.  In fact years ago before the back of my right thigh lost some sensation that I still haven't regained it felt cold as if it was wet.  Now it mostly just doesn't feel anything.  What's going on with me feels like it's nerve related and not muscle but there is no way for me to know at this point.  

I also have burning in the back of my upper right arm and a spot on the palm of my right hand feels hot when I touch cold to it.  These are both new symptoms that just sprung up this week.  My body sure knows how to keep things interesting: )
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Avatar_f_tn
Everyone,

  I had a great experience with my Neurosurgeon yesterday!  My husband and I decided to go see him to pick his amazing brain, and to try to get a referall.  He is still just as great as he was when we were going through TN and MVD.  He was shocked that the Neurologist didn't do a Spinal Tap or Evocked Potentials.  He diagnosed my Bilateral Trigemianl Neuralgia and put me on a VERY low dose of Tegretal to help confirm the diagnosis (100 mg twice daily.  I knew he would want me to take it to confirm the diagnosis because that's what we did last time but my pain is infrequent enough that I would rather deal with the pain than the side effects of the meds.  This is why the dose is so low, plus I'm pretty small so a low dose might just be enough.  

He is sending a referral for me to a group of MS Specialists where he is sure they will do the tests that I should already have had.  He said he always suspects MS with Bilateral TN and with my symptoms and family history I need a thurough MS work up.  He said that if they turn out to be horrible to let him know and he'll find me someone else.  He was so displeased with my previous experience and was so understanding and really took my symptoms seriously.  He basically disagreed with everything that my previous Neurologist said.  At the end of our very long appointment he told me that I can always come to him for help.

We feel like we're on the right track now.  I may not get a diagnosis for some time but my Neurosurgeon restored our confidence in that atleast some doctors care.

Thanks everyone for all your help!  I'll keep you posted on how it goes.
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1831849_tn?1383231992
Finding the right doc(s) is HUGE :-)
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429700_tn?1308011423
That was such a smart move on going to the person who originally diagnosed you with TN!  Isn't it nice to feel validated?

An MS specialist will run all of the tests you need with the correct MS protocol.  MS protocol for an MRI involves having the MRI on a strong enough machine (at least 1.5T--3.0T is better) with this slices and contrast agent with the brain MRI.  Contrasting isn't needed for the spine.  

I do have the experience of a limb falling asleep.  My right arm would be asleep and there was even a few times that I couldn't move it.  This happens just sitting without any pressure on it or most often at night.  Many times the sensation would wake me up.  Both my legs now go to sleep--but it started on the right.  It is especially bad sitting in a hard chair or on the toilet!  I've also had the sensation of stepping into a never-ending hole.  It is a very odd sensation . . . this is the best I can describe it.

I have addressed this issue with my doctor before (after MS diagnosis) because both of my daughters say they have trouble with this.  She told me that it is normal for legs to go to sleep for a short period of time.  She says it is not normal if it occurs often through the day or lasts for longer than a few minutes--especially with younger women who are thin.  Thinking back when I was younger, I had this problem.  When I was older, I never thought much about it, until I was pretty frequent during the day, and I actually had times like I said above where my arm was paralyzed and had to be moved by my other arm.  For me, I can't pinpoint a time it just all started.  

I've had the same experience with the diagnosis of fibromyalgia without the tender points.  My diagnosing neurologist said it was a "wastebasket diagnosis" because no one could figure out what was going on.  For you, the fibromyalgia and conversion disorder diagnosises are most likely that.  The doctors thought that they had to come up with some sort of diagnosis.  I do not understand why a doctor has to give a wrong diagnosis for someone suffering.  This is much worse than having no diagnosis at all, I think.

It sounds like you are finally in good hands.  I do have a good feeling about this in that he won't let you go through that kind of experience again.

Who knows about the MRI you had.  Most likely the MS specialist will do another MRI, unless this one was pretty recent.  

Hopefully you get tested for Celiac Disease.  There's a blood test that done to rule this out.  You will also have a bunch more blood tests.  A deficiency in vitamin B12 can cause neurological problems and if you have Celiac Disease, this could cause vitamin deficiency including B12 anemia.  It can cause numbness and tingling.  I would not change your diet, though, until after your blood tests because having a gluten-free diet will make the test for the disease invalid.

  
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3054080_tn?1358726456
I certainly don't want to hijack this thread but thank you for sharing what yournneurologist told you.

I am thin, on the low end of my recommended weight range, and this mysterious *going to sleep " has been happening for a while now.

I have woken with the entire right side of my body asleep. Just recently this happened with my right and left arms, and I was laying on my back!

Cometgirl, I am very glad your appointment went well and it sounds like you have an excellent advocate!

Hugs, Minnie :)
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My brother has been to so called the best clinics like, the New England Neurosurgical Assoc, Mt. Sinai School of Medicine Dept of Neurosurgery, Brigham and Women's Hospital in Boston Mass, Bone, Muscle and Joint Specialist, Lahey Clinic in Mass among numerous Psychologist, MD's, PHD's, Neurologist etc.  No one has been able to help him.
His diagnosis was Conversion Disorder because these Doctors can't find the problem.  The symptoms began in his big toe (twitching) and within the past 4-5 years he has gotten worst.  He shakes uncontrollability when he is awake.  He had back surgery within the past 5 years.  Our Mother broke her hip 4 years ago and since passed away.  He had to retire this year because he could not stand for very long and shakes all the time when he is away.  He is now 61 years old.
Does anyone know a Doctor in South Florida that deals with this disorder?  Help is appriciated.
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I would try a MS Specialist if the first Neurologist wasn't one. If that does not work try another. It took me a dozen Neurologists and 46 years for a diagnosis. They were always clear I had a Neurological problem they just did not figure out it was MS. Don't give up.

Alex
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Have they looked into Parkinsons? Does his shaking happen when he is sitting still? Moving? All the time?

Does he have other symptoms besides the shaking and inability to stand for very long?

I'm sorry this has dragged on so long for him! It's good that he has you looking out for him though. It's got to be so frustrating.

I'm on the opposite coast so can't recommend anyone, but I will pray you are able to find a dr who is willing to help.

Hang in there.
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Hi,
     I have been looking for answers for 12 years. My Doctor sent my blood work to a laboratory in Arizona. This lab is committed to understanding and diagnosing chronic inflammatory and vector-borne diseases. Parkinson's, MS, ALS, Lupus, Chronic Fatigue Syndrome,  Chronic Lyme Disease and many other auto-immune diseases. Their advanced testing and wide range of detection are finding answers for many patients and doctors alike. I know many people don't get better with treatment for Lyme because they often have co-infection from the vector borne disease. Tick's can carry more then 1 infection with that bite. Fry laboratories advance testing are diagnosing these co-infections. For many years doctors thought I had MS, Lyme's, chronic fatigue and fibromyalgia. What I had was a bacteria and a parasite infection that I got from a tick/insect bite. I have been so sick for so long.... on oxygen and in a wheel chair. Plus 10 other diseases were on my list of confirmed illness. I am getting better with treatment. Dr. fry has a 90% recovery with the treatment I'm on. I am beginning to wonder if medical doctor's are going to start getting more answers to a lot of chronic conditions. This is my story and I pray for the best for you.  Doctors are encourage to contact frylabs.com with their unique tough-to-crack case. Patient's are encourage to call them or go to the web site, to help answer your questions.  Twinjackie
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Please check out what I wrote and  frylabs.com website. Call and ask them question to find a doctor that knows about this advance lab. I'll pray for your brother... So sorry about all the suffering.
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