any ideas about what this may be!!

[Rachelinpain]

Hi, I have never posted here before , would really like to post to a doctor but that doesnt seem to be possible lately.  Maybe someone has an opinion for me.  In December I began having strange neurological symptoms.  It started with extreme fatigue , some headaches and some weakness, in an arm or leg, it kind of varied, some numbness and feeling of heaviness in my left arm.  I had these symptoms and then started having some nystagmus, just a day or too and felt like my vision was OFF.  I also had a headache behind my r eye which was weird for me.  I went to see my PCP she said I was not slepping well and that my migraines were coming back and gave me some meds which i stopped taking cause they made me feel terrible.  

The next few months i had brief episodes of weird eye symptoms and some on and off weakness, fatigue this would last from a number of hours to weeks.  

In february the nystagmus came back, sever this time.  I could not see anything, everyhthing wqa moving, I was having difficulty focusing, blurry vision and nystagmus. I went to the er.  They saw my heart rate was elevated and my hands were trembling quite a bit.  They checked me for hyperthyroid, ignored my eyes since my vision was normal and sent me hoem.

The next day I went to the optomotrist, thinking this problem was with my eyes, she said I had a slight astigmatkism but otherwise my eyes and retinas looked perfect.

I had the eye problems for a few weeks and then it went away.

Since then I may have had some other symptoms but by this time I was begining to ignore alot of thins.

2 weeks ago I was awakened from a dead sleep with an excruciating headache on teh right side of my head and I had loss of viosion, I called to the bathroom took a handful of ibuprofen and after about 5 hours it had subsided enough for me to get up and go to work (this was nothing likr my migrains).  I am a 4t year medical student on my surgery clerkship and when I arrived one of my residents told me i needed to see a doctor.  I went to the er.  they did a cat scan which was normal and an lp which showed an opening pressure of 41, normal is 20.  otherwise my exam waqs normal except my rhomberg test was possitive which means when i close my eyes i fall down.  they diagnosed me with pseudotumor, drained a bunch of csf fluid gave me some ant-nausea medicine and sent me home.  I went to my PCP, based on her exaam she concurred, started me on meds and said i should feel better in a few days.

after 5 days i felt worse, i was having double vision (which I was having before) and i could not walk, i was off balance i fell down many times my speech was slurred and i was mentally SLOQW, even my family asked if i was drunk.  I went back to the er, i could not see, could not walk, they did another lp the pressure was normal and did an mri,mrv and mra.  besides a genetically absent left saggital sinus (wich they said is not causing my symptoms) everything was normal.  The next day I went to a neurologist who told me i did not have pseudotumor and that my first reading was wrong and that i should stop my meds.  he said i had a migraine, could ot explain my other symptoms and sent me to see a opthomologist.

i went to another neurologist today for a second opinion who thinks i could have pseudotumor but can not explain my other symptoms.  he is getting a mri of the cervical spine and checking my b12 and copper and sending me to neuroopthomologist but basically can not tell me anything.  

I am now dependent on my cane, can not drive and can not remember anything unless i write it down.  As you can tell i can not even type.  I an  1 year shy of being a doctor and i can not answer simple questions.  i can not carry my children because i have almost hurt them 2 times, i can not write checks or remember whaen i ate.  i fell like i am 80.  
I now have been to a neuroopthomolgist who has basically ruled out pseudotumor.  she says my r optic nerve looks pale but otherwise my eyes look healthy.  my vision has gone from 20/20 in march to 20/30 now but she can not explain my blurry vision, nystagmus or difficulty walking.  She is going to check me for lyme disease and look at my mri then call me.  she also mentioned something about a possible paraneoplastic syndrome related to a cancer i had back in 2002 that could b attacking my nervous system.  so still really i have no answeres, what should i do, any suggestions would be appreciated.

[mae1]

when they did your MRI did they use contrasts?

[patsy10]

My thought would be MS.  Although your testing has been normal.  I have many neuro issues but not nearly as bad as yours.  I hope they find out what it is.  I'm still searching for a diagnosis 2 years later.  My tests are all normal as well.  Good luck to you.  I'm very sorry about your problems.

[Rachelinpain]

they did with and without contrast, i am also getting aa cervical spine mri as wel soon, opefully very soon.  the mri reort said nothing about any lesions but it was done at a militaru facilit and i do not really trust them.  when i look at t hem i see things that may look abnoral, but i do not know mch about reading mris, whatever i did see were very small so not all that noticable, i wish i could find some one else to look over them and go through them with me.  my ct scan also said that my brain size was decreased, but i have been getting by just fine untill now with a small brain so i gues sit doesnt really matter.  I have also been researhing ms alot since my symptoms seem to fit, but they are so vaugue they fit many things.  i do not know if there is something else i should be requesting, no one has mentioned ms to me through this whole thing except the er attending i saw on my trip after my headache.

[patsy10]

Could you go and see a neuroimmunologist (MS specialist)?  Not to say you have MS but these are specialized neurologists  who are skilled at diagnosing or ruling out MS-like illnesses.  Also, have you been checked for lyme?

[patsy10]

Sorry,

I forgot you were a medical student.  You obviously know what a neuroimmunoligist is.  Even some of the best doctors don't know much about lyme disease so keep that in mind.

[Rachelinpain]

they are checking me for lyme as i do have recent tick bite, but i do not know of a specialist in my area, i will have to check and actually i have never heard of a neuroimmunologist, i know very little about ms, perhaps that is one reason why it is so often missed, they do not really concentrate much on that in medical training, i will definately check into it.  thanks

[myasthengirl]

i'm not sure what you are having, but your symptoms sound kind of similiar to what i have.  i was also having weakness, difficulty walking, double vision,,,,and so on.  It turn out that i have myasthenia gravis.  my primary doctor doesn't actually know what i have until i went to see a neurologist and optomneurologist (not sure on the spelling) but they know actually what i have after telling them all the syptoms.