Discussions By Condition: I cannot get a diagnosis.

I'm a Mystery

Posted In: I cannot get a diagnosis. 26 Replies
  • Posted By: armywife411
  • December 30, 2008
  • 05:22 PM

Hi Everyone,

I'm a 31 year old woman and apparantly I'm a mystery, at least that's what the neurologist says.. http://img.webmd.com/community/images/smile.gif

I'll try to keep it short..this is my story.

I was a very healthy child aside from a run in with Typhoid Fever when I was six months old. When I was 16, I contracted mono (found out when I passed out cold at work.. http://img.webmd.com/community/images/smile.gif ), it was after that the "episodes" began. When this happens I get the following symptoms: - tremors (most pronounced in my right hand, which has never been completely still for the last few years) - numbness and tingling (worse in extremities but sometimes all over) - muscle spasms (mostly in arms and legs, sometimes very painful, sometimes little pain) - muscle stiffness and rigidity (worst in right leg - I was basically dragging it all of last week) - muscle weakness - difficulty speaking (the words are there, they just don't always come out the first try) - twitching and jerking movements (I don't notice this but others do) - difficulty walking (when I do walk I'm told it seems very jerky and unsteady) - loss of balance (everytime the doctor makes me stand up and close my eyes I go down) - short-term memory loss ( always carry a notepad.. http://img.webmd.com/community/images/smile.gif ) - fatigue (after about 2 hours of being up..I'm done)

I gave up on doctors for a long time...tired of being told nothing was wrong and it was all in my head. Finally found one I trust and so I embark down this path again. I the last week I have had several test done; CAT, MRI, EMG, Lumbar Puncture and blood work by the gallon - all negative. The only thing that found anything was the neuro exam which I failed miserably.

Both the neurologist and the internist say that they know that something's wrong but are stumped as to what...they say I'm a mystery..YEA!!! http://img.webmd.com/community/images/smile.gif

I'm just concerned beause this episode is so far twice as long as any other has been and I just can't seem to push through it. I just want to find out what's going on and go from there.

Has anyone ever heard of something like this? Perhaps someone has a suggestion that I can pass on to my doctor.

Thanks for listening, any help is appreciated.

Reply Flag this Discussion

26 Replies:

  • Im sure i know what your issue is as you have the same medical problem as i do. Unfortunately there is much debate currently going on about this illness in the medical community as 95% of doctors are not up with the latest reseach of it. I too test postive on the romberg test (it is a common non specific finding in this medical condition one of the many things which can help indicate it). The romberg test is the one you mentioned in which they get you to stay standing when you shut your eyes... i fall immediately. i also have a lot of your other symptoms.. eg the jerking, twitching (myclonus), the leg dragging etc with it. I also get hand tremors with it at times. In fact when i got put into hospital with it due to the neurosymptoms it was giving me... nurses in the hospital were mistaking me for a parkinsons disease patient due to the tremors. The condition im quite sure you have (it is often triggered by mono) is called M.E. myalagic encephalitis... it's a subgroup of what is called chronic fatigue syndrome or chronic fatigue immunity dysfunction sydrome... a neurological subgroup. (some with ME actually dont suffer much tiredness but more neuro symptoms and weakness..but others do). (be aware that some say that M.E is a different thing to CFIDS but others lump these illnesses together) i suggest you check out http://www.ahummingbirdsguide.com/ (it's a website by another with this condition but she has it quite severely) http://72.14.235.132/search?q=cache:Ku0Ju1PDuDkJ:www.afme.org.uk/res/img/resources/ME%2520Diagnosis%2520Report%2520master.pdf+M.E.+alliance&hl=en&ct=clnk&cd=2 is a link to a ME alliance (the ME alliance is a group of ME organisations which have come together to help bring awareness and compain for this medical condtion) Action for M.E. www.afme.org.ukAssociation of Young People with ME www.ayme.org.ukCase History Research on ME (CHROME) www.chromesw6.co.ukThe ME Association www.meassociation.org.ukThe National ME Centre www.nmec.org.ukThe Young ME Sufferers (Tymes) Try researching at these sitesThe ME association www.meassociation.org.uk The Association of young people with ME www.ayme.org.uk Case History research on ME (CHROME) www.chromesw6.co.uk the national ME centre www.nmec.org.uk The Young ME Sufferers Tymes trust www.tymestrust.org Action for ME www.afme.org.uk you will need to do a lot of research all cause half of medical texts dont even mention this illness at all in them and hence so many doctors dont even know about it.. and if they do.. they dont know much. research and take the info to your own doctor. Also check out http://wwcoco.com/cfids/bernesx.html (chronic fatigue immmunity dysfunction syndrome.. which many put ME under.. symptom list from studies done)... realise thou that not all of those would have ME subgroup of CFIDS but this list will give you some idea how common neuro symptoms are in this illness (something which most doctors unless they specialise in this illness.. are not aware of)
    taniaaust1 2267 Replies
    • December 31, 2008
    • 06:16 PM
    • 0
    Flag this Response
  • if you are after a support forum for this illness.. i suggest http://forum/notcrazy.net .. another good site for info on this is at www.immunesupport.com (It's the biggest online CFS site..with lots of info) but it isnt as friendly as the notcrazy one.
    taniaaust1 2267 Replies
    • December 31, 2008
    • 06:28 PM
    • 0
    Flag this Response
  • Thanks for the info. I am curious how often you have attacks, how long they last, and how long it take to recover? Personally, I typically have one approx. every 4-6 months. Most last about a week (last time was over two) and usually a week or two to recover (last one also took longer to recover from, almost a month) Thanks again.
    armywife411 7 Replies
    • December 31, 2008
    • 08:06 PM
    • 0
    Flag this Response
  • Hi Everyone, I'm a 31 year old woman and apparantly I'm a mystery, at least that's what the neurologist says.. http://img.webmd.com/community/images/smile.gif I'll try to keep it short..this is my story. I was a very healthy child aside from a run in with Typhoid Fever when I was six months old. When I was 16, I contracted mono (found out when I passed out cold at work.. http://img.webmd.com/community/images/smile.gif ), it was after that the "episodes" began. When this happens I get the following symptoms: - tremors (most pronounced in my right hand, which has never been completely still for the last few years) - numbness and tingling (worse in extremities but sometimes all over) - muscle spasms (mostly in arms and legs, sometimes very painful, sometimes little pain) - muscle stiffness and rigidity (worst in right leg - I was basically dragging it all of last week) - muscle weakness - difficulty speaking (the words are there, they just don't always come out the first try) - twitching and jerking movements (I don't notice this but others do) - difficulty walking (when I do walk I'm told it seems very jerky and unsteady) - loss of balance (everytime the doctor makes me stand up and close my eyes I go down) - short-term memory loss ( always carry a notepad.. http://img.webmd.com/community/images/smile.gif ) - fatigue (after about 2 hours of being up..I'm done) I gave up on doctors for a long time...tired of being told nothing was wrong and it was all in my head. Finally found one I trust and so I embark down this path again. I the last week I have had several test done; CAT, MRI, EMG, Lumbar Puncture and blood work by the gallon - all negative. The only thing that found anything was the neuro exam which I failed miserably. Both the neurologist and the internist say that they know that something's wrong but are stumped as to what...they say I'm a mystery..YEA!!! http://img.webmd.com/community/images/smile.gif I'm just concerned beause this episode is so far twice as long as any other has been and I just can't seem to push through it. I just want to find out what's going on and go from there. Has anyone ever heard of something like this? Perhaps someone has a suggestion that I can pass on to my doctor. Thanks for listening, any help is appreciated. http://forums.wrongdiagnosis.com/showthread.php?p=135792#post135792 Come on over to the b12 deficiency forum. Many of these thiongs could be b12 deficiency related. Check out the list of symptoms posted a couple of weeks past and talk to folks.
    Freddd 3576 Replies
    • January 1, 2009
    • 00:07 AM
    • 0
    Flag this Response
  • Hi Freddd, I've been tested for B12 and came back well within normal rates. Thanks for the suggestion though.
    armywife411 7 Replies
    • January 1, 2009
    • 00:17 AM
    • 0
    Flag this Response
  • Hi Freddd, I've been tested for B12 and came back well within normal rates. Thanks for the suggestion though. Hi Armywife, You and many others who do end up having funtional b12 deficiencies. The test is almost worthless. What was the actual number? In studies that accept people by symptoms rather than test results people with methylb12 responsive symptoms have intial serum b12 levels over 1500pg/ml. SO comne on over and check pout the symptoms and talk with folks. You might hjave your eyes opened and even get results. I certainly did and would not have test low as I was taking the wrong kind of b12. I puzzeled over 100 docs in all for decades.
    Freddd 3576 Replies
    • January 1, 2009
    • 00:33 AM
    • 0
    Flag this Response
  • Thanks for the info. I am curious how often you have attacks, how long they last, and how long it take to recover? Personally, I typically have one approx. every 4-6 months. Most last about a week (last time was over two) and usually a week or two to recover (last one also took longer to recover from, almost a month) Thanks again. ummm now i aint so sure by what you've just said, i'd assumed you were having issues a lot more often than that.. eg signs that something was wrong.. a lot of the time For the issue i have.. these "attacks" can last from just hrs to many weeks... my longest eposide of major neuro issues was several mths.
    taniaaust1 2267 Replies
    • January 1, 2009
    • 04:17 AM
    • 0
    Flag this Response
  • Do you have these three symptoms:easy muscle fatigueability,loss of short-term memory or loss of power to concentrate,fluctuation in symptoms.It takes all three of these to have a diagnosis of M.E.
    richard wayne2b 1232 Replies
    • January 1, 2009
    • 02:16 PM
    • 0
    Flag this Response
  • Do you have these three symptoms:easy muscle fatigueability,loss of short-term memory or loss of power to concentrate,fluctuation in symptoms.It takes all three of these to have a diagnosis of M.E. she did.. she said she had short term memory loss and had to always carry around a notebook due to it. "muscle weakness" i'd say was muscle fatigueability and "fatigue (after being up for 2 hrs Im done). That shows symptom fluctuation. Symptoms vary. and obviously post exertional. im finding her case very interesting as it's it's classical textbook description of how many experience the illness .. but with that catch that she only has the issue coming in very occassionally.. much less than those i know who certainly do have ME. (could it be an abnormally mild ME case? mind enough that she's fine most of the time) Her history points to ME/CFIDS/CFS or whatever one wishes to call it too.. with the mono starting the issue of. Studies have shown that 10% of CFIDS cases are triggered off from mono. thanks for your posts here :) ................ Freddd.. can you point me in the direction of a study in which shows B12 deficiency or other infectious illnesses may be triggered off by mono?? Im curious if you took in account her history there or not?
    taniaaust1 2267 Replies
    • January 2, 2009
    • 07:06 AM
    • 0
    Flag this Response
  • I have done some research on this disorder in the past few days. I must admit that I am somewhat skeptical as it appears as though the individual have this disease do not experience remission. From what I have read it appears as though they experience more of a waxing and waning of symptoms rather than a relapse/remission cycle as I do. My cycles begin with and odd sort of uh-oh something's coming feeling (which I always try to fight off) usually shortly after this, the muscle spasms and cramps begin. Then after anywhere from 1-7 days after this it hits full force...it feels somewhat like a big wave coming over me. The deterioration is quite rapid after this...this is when all of the symptoms I described occur. This typically lasts approx 7-14 days. Then a feeling of exhaustion and achiness for 1-4 weeks. After that I am myself again...until the next time. The only issues that do occur outside of this are balance problems and hand tremor (although much more mild and almost completely gone at times).Also, I just got a copy of my records and will review for any further relevant info..if anyone has more questions, please feel free to ask.I have an appointment with one of the top Movement Disorder Neurologists in the country on the 12th so I'm trying to gather up any ideas possible...never no what might trigger and idea with him.Thanks for everyone's help thus far.:)
    armywife411 7 Replies
    • January 2, 2009
    • 04:23 PM
    • 0
    Flag this Response
  • Freddd:Who the ***l are you to say that aB12 level from a lab is ''almost worthless?''
    richard wayne2b 1232 Replies
    • January 2, 2009
    • 04:43 PM
    • 0
    Flag this Response
  • Complications of Crohn’s Disease

    Recognize the risks associated with Crohn’s disease.

    8 Surprising Facts About Cholesterol

    Did you know that one in six US adults has high cholesterol?

  • Freddd:Who the ***l are you to say that aB12 level from a lab is ''almost worthless?'' If I said ab12 is "almost worthless" I made a mistake. CB12 (cyanob12) from anywhere is almost totally worthless for most and tworse than totally worthless for some percentage.
    Freddd 3576 Replies
    • January 2, 2009
    • 07:25 PM
    • 0
    Flag this Response
  • she did.. she said she had short term memory loss and had to always carry around a notebook due to it. "muscle weakness" i'd say was muscle fatigueability and "fatigue (after being up for 2 hrs Im done). That shows symptom fluctuation. Symptoms vary. and obviously post exertional. im finding her case very interesting as it's it's classical textbook description of how many experience the illness .. but with that catch that she only has the issue coming in very occassionally.. much less than those i know who certainly do have ME. (could it be an abnormally mild ME case? mind enough that she's fine most of the time) Her history points to ME/CFIDS/CFS or whatever one wishes to call it too.. with the mono starting the issue of. Studies have shown that 10% of CFIDS cases are triggered off from mono. thanks for your posts here :) ................ Freddd.. can you point me in the direction of a study in which shows B12 deficiency or other infectious illnesses may be triggered off by mono?? Im curious if you took in account her history there or not? I know of no studies that show that. However, in myself when I had mono, I was triggered into a year long b12 deficiency crisis. I have had repeasted such crisis', the last one starting in 1987 and ending on May 21, 2003 at 6:10 pm when I took my first Enzymatic Therapy methylb12. That one was triggered by "an unidentified virus" (according to my doc). In my experience with myself, my children and many many people on the internet who have recovered almost any illness, injury. My entire history points at ME/CFS/FMS. All of those symptoms are on the list. And fortunately ALL of those symptoms normally respond to the two active b12s plus all of the cofactors that we list in the protocol. After the phase of active healing, as long as the necessary supplements are taken, the symptoms don't return. It is a full scale healing, not a remission. In 1987 after the crisis began, it took me 6 months to be able to walk half a block. Other than my knee problems I could be ready to run a 10km race in 6 months. I could do a 5k tomorrow, at 4500 feet. When I vacationed at 7000 feet it took me two weeks to work up from 17 minutes of arobic swimming at 7000 ft to 35 minutes. Another two weeks and I could have worked up to an hour. In my experience the early stages of ME/CFS/FMS build up gradually until a person has a crash triggerred by a stressor such as I described.
    Freddd 3576 Replies
    • January 2, 2009
    • 07:42 PM
    • 0
    Flag this Response
  • Do not feel bad I am a 27 year female with a 7 1/2 year daughter going the the same thing I had multiple test everything comes out neg..Then the last neuroligist said it was all in my head. I do not pass out but sometimes everything goes black and blurry for no reason. I am worried and exhausted, to the point I am going to try to fight it on my own and forget the doctors. I figure I'll find out what's wrong one day when I wake up and try to get out of bed and find that it will be impossible. I 'll pray for you though, good luck, and try to enjoy the few hours in a day that you get because that will help some.. God Bless
    Anonymous 42789 Replies
    • January 3, 2009
    • 08:31 PM
    • 0
    Flag this Response
  • Originally Posted by richard wayne2b http://forums.wrongdiagnosis.com/images/buttons/viewpost.gif Freddd:Who the ***l are you to say that aB12 level from a lab is ''almost worthless?'' If I said ab12 is "almost worthless" I made a mistake. CB12 (cyanob12) from anywhere is almost totally worthless for most and worse than totally worthless for some percentage. I am answering this again as I see I made a mistake in reading it. You were asking about "a b12 serum level", not anything to do with ab12 (adenosylb12), my mistake. Too much alphabet soup. Regarding serum levels of cobalamins. A serum level measures the amount of circulating cobalamins. It is mixed cobalamins made up of a mix of active and inactive and transitional cobalamins. It could contain post detox cobalamins like cyanocoblamin on it's way to kidney excretion as well as methylcobalamin which is the main circulating active cobalamin and transitional cobalamins that are bound to an amino acid or whatever. A single sublingual methylb12 or methylb12 injection can up that level to over 200,000-1,000,000 pg/ml for a short time. A steak dinner can raise it several hundred pg/ml for some hours. Anybody but a vegetarian can have quick temporary increases each time they eat an animal based food. In a typical serum level range of 170-1200pg/ml the upper limit is a statistical artifact based on percentages of people in the upper range, not an upper safe limit or anything like that. It isn't even an upper limit for finding active b12 responsive symptoms. Studies in which participants are chosen based on symptoms rather than test results typically have 2/3s of the b12 responsive participants above test based criteria who would normally be excluded from tests. Of those the average intial b12 level is over 700pg/ml with some over 1500pg/ml. At 200pg/ml almost everybody will have scads of active b12 responsive symptoms and yet most pernicious anemia occurs below that level. Based on PA being the only symptom of b12 deficiencies that level makes sense. However, any reading, no matter how high can't rule out b12 responsive symptoms. Japan with a lower cutoff of 550pg/ml has fewer problems. A practical lower limit at which to reasonably expect no responsive symptoms might be 3000pg/ml or something like that with no upper limit. An example of how labs manipulate the socalled "limits" is my MCV. Six years ago it was at 99.8 where it had been almost forever. The lab's "alarm" level was >96. Two years ago it was no longer an "alarm" at 99.8 as the alarm level was now >100. My internist was shocked at the change. Methylb12 didn't bring it down at all. What did the trick was methylfolate, after years at 2+mg/day of folic acid having no effect. I called the lab and asked about it. They explained that at >96 they had to alert so many people that the docs ignored them. So they moved it up to >100 so that they could allert only a few percent. The nations average MCV is moving up from widespread deficiency of methylb12/methylfolate most likely but instead of noting that they move the alert level up so they only have to alert a small percentage. That's totally bogus. MCV should not be graded on a curve. If half the people are "failing" they ought to be told about it. The hemotological standards haven't changed at all. Because cobalamin serum level is set to alert PA, not the massive number of other problems responsive to active b12s and is merely a statistical artifact it is pretty worthless in detecting non PA problems. As most mothers used to ask "If everybody were jumping off the cliff, would you?". The statistical answer is YES. The whole country is jumping off an invisible statistical cliff and the warnings are moved to 10 feet over the cliff edge because so many are jumping and they don't want to upset anybody. Doesn't this bother anybody else?
    Freddd 3576 Replies
    • January 4, 2009
    • 01:13 AM
    • 0
    Flag this Response
  • I have done some research on this disorder in the past few days. I must admit that I am somewhat skeptical as it appears as though the individual have this disease do not experience remission. From what I have read it appears as though they experience more of a waxing and waning of symptoms rather than a relapse/remission cycle as I do. My cycles begin with and odd sort of uh-oh something's coming feeling (which I always try to fight off) usually shortly after this, the muscle spasms and cramps begin. Then after anywhere from 1-7 days after this it hits full force...it feels somewhat like a big wave coming over me. The deterioration is quite rapid after this...this is when all of the symptoms I described occur. This typically lasts approx 7-14 days. Then a feeling of exhaustion and achiness for 1-4 weeks. After that I am myself again...until the next time. The only issues that do occur outside of this are balance problems and hand tremor (although much more mild and almost completely gone at times).Also, I just got a copy of my records and will review for any further relevant info..if anyone has more questions, please feel free to ask.I have an appointment with one of the top Movement Disorder Neurologists in the country on the 12th so I'm trying to gather up any ideas possible...never no what might trigger and idea with him.Thanks for everyone's help thus far.:) CFIDS for some is very cyclic.. but as i said.. the way yours spaces out.. well isnt a usual presentation of it so it's possible your issue may be something else. I posted again as i wanted to tell you that this illness can and sometimes does go into remission, (thou i havent heard that happening over and over.. thou if you always have some symptoms. One couldnt say whatever you have is in complete remission either). I went into like a complete remission in which i wasnt getting symptoms with it for 3 yrs. Apparently this remission.. is a common pattern of it. (Dr Cheney a famous specialist, talks about that online somewhere). (but yeah..over and over remissions ARE NOT the norm). They are saying that their may be an actual blood test out for this illness within the next year (they've worked out some blood markers for it now to differentiate..but it hasnt been made public yet). I strongly suggest "just in case" this is your issue, to when this blood test comes publically available to have the test to rule it out. Cause whatever you have is appears very close to it. best luck
    taniaaust1 2267 Replies
    • January 4, 2009
    • 05:00 AM
    • 0
    Flag this Response
  • Wow, You had the aura, the spasms, then the fatigue. Symptom free then happens again. Sounds like seizures to me. Petite mal maybe Would there be such a thing as a week long seizure? I dont know. Have you ever lost your bowels? Hope my thought helps trigger an anwser.
    iamamazed 2 Replies
    • January 5, 2009
    • 03:33 AM
    • 0
    Flag this Response
  • Hi armywife! Let us know about your meeting with movement d/o specialist. I won't really waste your time grilling you over the stuff you already posted, because I get the feeling that you have probably plugged yourself into a pretty good referral network at this point. Out of curiousity, which is your dominant hand, left or right?
    fewd4thought 126 Replies
    • January 5, 2009
    • 03:58 AM
    • 0
    Flag this Response
  • Thanks again for all the suggestions...this has been the best response that I have gotten out of the 3 boards that I have posted on. plh: I definately feel for you, I would not wish something like this on anyone else. I too have been told multiple time that I was crazy or delusional, keep persisting and hopefully we with both find some answers. iamamazed: I had never even considered something like that, I will do some more research and bring that idea up with the doctor. I have read some info on aura prior to migranes but never really thought of my experience as being an aura because of the lack of headache...another thought for consideration. fewd4thought: Thanks for the vote of confidence in the new doc...I'm trying to stay positive about the prospect of him being able to identify my condition. my internist actually told me a story about a gentleman who had been shuffled around between doctors and neurologists with no results. This neurologist was able to diagnose him almost instantly becuase of his specialty and experience. I'm crossing my fingers for an experience like that! :) Also, in response to your question, my right hand is the dominant one. Thanks again to everyone who has replied so far and I look forward to hearing any other thoughts or suggestions anyone may have.
    armywife411 7 Replies
    • January 5, 2009
    • 04:43 AM
    • 0
    Flag this Response
  • I wanted to respond to earlier posts with reagard to CFS/ME. Upon some more research I am less convinced of this as a possibility after reading descriptions of symptoms and experiences. Whatever condition this is presents itself in a similar manner Parkinson's or MS. Also, I have found no correlation betweem CFS/ME and some of my symptoms such as speech difficulties and the larger jerking-type movements. Every physician that I have seen is convinced that this is neurological in nature and based on my experience I am as well.I will not completely close the door on anything at this time as that is job of the man I see next week.
    armywife411 7 Replies
    • January 5, 2009
    • 06:33 AM
    • 0
    Flag this Response
Thanks! A moderator will review your post and it will be live within the next 24 hours.