I have a diagnosis of Pseudotumor Cerebri but CSF testing is abnormal.CSF test results are: elevated CSF IgG index(1.49)CSF IgG synthesis rate(39.8)total proteins (54) and 2 oligoclonal bands in the far gamma region,Albumin Index is normal and all other test are with in normal limits.I have had this for 7 years and I can't find a doctor to help me with my pain and treatment.They thought it was MS for a while but MRI's and EMG's always come back normal(except slight inferior ectopia of cerebellar tonsils of 4mm,and small increased signal in the right mastoid region). I suffer from daily headaches,buzzing feeling mostly in feet(worse when anxious and more noticable when at rest),little squiggly flashes of light on vision most noticable when I look at a light colored wall or the sky, constant neck pain, small amount of pain and aching in muscles and joints. I have been through about 10-12 specialists in 7 years and I still don't have any answers, the have tested me for several illnesses like:Lyme,MS,Neurosyphillis,several additional Lab tests, and all Labs seem to be normal except CSF. From the information I gave you can you think of anything we missed? Do you have any idea where I should go from here? Have you ever seen test results like this with negative MS testing? Do you know anyone that can help me? All the doctors want to do is treat the symptoms because they don't know what is causing them. Do you think I will ever find the answers to my condition?Thank you so much for your time.
I don't know the details of your diagnosis of Pseudotumor, the characteristic CSF findings is elevated CSF pressure.
The other findings are relatively non-specific and are mildy abnormal at best. Oligoclonal bands can be seen in a number of disorders including MS, sarcoid, among others. They must be commpared with blood oligoclonal bands - if there are oligoclonal bands in the blood too then they probably have not arisen from a neurological disease! You must be careful that it is not a red herring. Perhaps a repeat spinal fluid analysis and comparison with blood would help. In the meantime you need help for chronic headaches or what sounds like chronic migraine with a headache specialist.
I also would like to add that in the past 8 months or so I get like dizzy spells or something it feels like car sickness,and a tightness of muscle feeling on the right side of my head above the ear and it only lasts for a few seconds but it happens several times a day. What kind of illnesses can cause elevated spinal fluid with elevated proteins and oligoclonal bands in CSF that have lasted for 6 years with barely any change in symptoms and negative MRI's?
I would bet anything that what you are suffering from is Chiari. I have Chiari, but MOST doctors will NOT consider it Chiari unless you have 5mm of ectopia, and even then, they do not believe that it causes any symptoms. I am herniated only 2mm, but I have all of the symptoms that you describe, plus a lot more. I have been to many many specialists only to be told that it was all in my head. Well, in a sence, they were right! I had to go to The Chiari Institute in NY to get an accurate diagnosis. My CSF pressure is also high, and I am currently taking Diamox for that. I was also told of many other related conditions that I have, including EDS and tethered cord. Come to find out I need major surgery....MAJOR! My brain is being severly compressed. The length of the tonsillar ectopia does NOT matter, it is how much blockage that it causes. I really think that this is your case because you have ectopia, PTC, and all of the symptoms that go along with it. I could sit here and type for hours! If you have any questions, please email me....***@**** GOOD LUCK!
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