Chiari I, White Matter periventricular lesions, low b12, but no diagnosis
I have been ill for about a year now but didn't begin trying to find answers until October of 2009. I have had many tests but no definitive diagnosis
I began with a couple of symptoms about a year ago,---- there have been times of plateaus only to begin again with additional symptoms. Currently, I am unable to walk more than 30 ft. w/o help, have difficulties with ADL's. My depth perception and proprioception are difficult which has caused falls.
I have to use a rollator when I go out to prevent falls.
I will make this brief:
Numbness of chin, flushing, extreme fatigue and probs with cognition, intermittent dizziness
electric shock feeling when my head is moved a certain way
Pain begins in upper right quadrant and continues in numerous areas of body
I notice that much of my trunk torso totally numb
twitches spasms begin in legs
exacerbation imbalance and depth perception problems
numbing feeling in right foot
muscle twitching and spasms
increase in pain and fatigue
I have had many tests and several doctors but I won't bore you with all of that. Here are the things we know so far:
vitamin b12 deficiency (230)---giving myself shots
Chiari Malformation I--5mm on left and 3mm on right
MRI--Multiple scattered bilateral periventricular areas of increased intensity on
blood tests continue to show mild inflammation crp and erp
Rheumatologist says I currently have Polyarticular Fibro though he says I need a second opinion from a different neurologist. He says to have my PCP do a referral and said to look in the phone book becuase I have moved to a different town.
My Spine Specialist says to get another neurologist to deal with the areas of intensity on the MRI.
The first and only neuro I saw spent 10 minutes with me, ordered tons of MRI's and said "you don't need to call, we will call you". Two weeks later her secy called and said "everything is fine and you don't need to come back". I never saw her again.
I picked up my MRI results report myself. I have never had anyone explain it to me.
I don't know where to go and frankly don't feel that I can try anymore.
I just can't go to another doctor to be shuffled around and I am too tired to be my own advocate anymore
I can’t ask my PCP for another referral, particularly when I want the referral to the University of Michigan which is out of their area.
Why is it so hard to get a diagnosis?
I have no quality of life at this point, can’t walk without a rollator and have difficulty with ADL’s
HI..we do have a forum here on MedHelp for chiari and u may find not only do we offer support, but quite a bit of info as well.
Knowing u have chiari ur next step is finding a true chiari specialist and get a few more tests...such as a CINE MRI to check CSF flow, and MRI's of ut lumbar and thoracic spine to rule out syringomyelia, tethered cord and Ehlers-Danlos, pusedotumor cerebri.....
I hope u stop by the chiari forum : )
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