Discussions By Condition: I cannot get a diagnosis.

Almost giving up!!

Posted In: I cannot get a diagnosis. 0 Replies
  • Posted By: Anonymous
  • January 7, 2008
  • 10:46 PM

I am new to this forum thing and hope to get some kind of answers or suggestions. I know this is a lot to post and I apologize but I really need some help. I am a 36 year old single mother of two teenagers. I have been having these symptoms for a year now; at times they are pretty severe lasting for a couple weeks up to a month. My right leg and lower right back problems have not changed in the last year. One of my younger brothers has the same problems except for more pain and he has recently become blind in one eye. I have an older sister who has some joint problems and another younger brother who has rheumatoid arthritis. I started having cartilage degeneration in my knees when I was 23 (started with my right knee). My 17 year old daughter is starting to have a few of these symptoms; I am more concerned about finding out what is going on now that my daughter is having some problems. I have listed below my current most problematic symptoms below.

Migraine type headaches, sharp shooting pains in temple
Eye pain, blurry vision, double vision, sensitive to light
Neck stiffness (pulling sensation down spine when I touch chin to chest)
Problems swallowing
Facial, scalp, arm, hand, & leg tingling (usually on one side)
Muscle twitching in arms & legs, restless legs and arms (both sides)
Hand tremors (both hands)
Neck spasms (head jerks up a little and always to the right)
Extreme fatigue, weakness in arms, legs & neck; any type of exertion leaves me sore for days
Heaviness & stiffness in both legs (have to have help getting up a flight of stairs)
Balance, coordination problems & problems walking
Have to read things over and over to understand what I’m reading
Have problems getting thoughts into words and speaking them
Memory problems, major problems with concentration
Lose track of what I’m saying in the middle of a sentence and takes a while to remember what I was going to say next.
Frequently drop things
Loss of position sense
Bruise very easily
Noise intolerance
Heat intolerance (heat worsens weakness, fatigue, shortness of breath, heavy feeling in chest) and hands & feet swell
Lower back pain and right leg problems (especially when walking)

Spinal Tap results showed an elevated CSF opening pressure of 30 and mildly elevated protein. Numerous blood tests have only shown very high IgG titers and elevated CRP (showing inflammation in the body), everything else has been negative. My first MRI was normal, second MRI in 6 months showed several white matter changes. So far I have been diagnosed with; asthma (since 4 years old), Mitral Valve Prolapse, Chronic Epstein-Barr Virus, Chemical meningitis (due to either spinal tap or epidural resulting in hospitalization for a few days), and torticollis.

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