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Avatar universal

Is this MS or?

Until July 1991 I was a healthy woman of 35. I then got as tick in my arm during camping and didn't get it out for five days. One week later followed with fever, chills, sore muscles, stiff neck etc. Rec'd Kenalog injections and Surgam. Didn't help much. Six months later friend returned from India with lung infection ?viral illness and stayed a few days with me. Twelve days later had stiff neck, severe headache,vomiting, fever, chills, sweats etc. This was in Feb. 1992. In mid-Feb began to have cognitive problems, felt like I had the "flu". Ended up in hospital for two weeks, no corneal reflex, optic neuritis, positive brain MRI, chorea, myoclonic jerks, dysarthria, painful legs. intial lesions included three-quarters of left temporal lobe, two areas of high signal in the right parieto-occipital region, right posterior centrum semioval, occiptal lobe of the lateral ventricle and others distantin the left hemispere. Consistant with inflammory disorder or ischemia Positive anti-cardiolipid antibodies, neg. spinal tape for oligoclonal banding, lympocytes and moncytes present and nucleated cells, depressed glucose, normal proteins. I was also very short of breath. Depressed C3, elevated CQ1 binding, elevated IGM, sed rate less than one, low anion gap, gross hematuria. Hypogammaglomunemia, with a selective IGA defiencey was picked up. Positive Shirmers.. All blood work to date neg. for Sjogren's,. Four spinal taps and eight years later still relapsing. Now they think this is MS? Brain continues to demylenate. I have no ankle or arm reflexes, neurogenic dysphagia, neurogenic pain both arms, severe headaches, tanal falls, glomular nephritis, . I have cerebritis or cerebral encepalatis twice in past two years, both times lastin g four months. Only treatment prednisone, until recently Plaquenil. Can you offer some insight I am getting worse and have no ansers, except maybe they think its MS. PS Past five weeks mucle twitching at rest waist down. Losts of sensory symptoms from onset. Tank you for your service. You have a great site. Tricia
6 Responses
Avatar universal
Dear Tricia:

Sorry that your having such terrible symptoms.  I am afraid that I must be missing something.  Although the MRI is very suggestive of a demyelinating process, your CSF has been completely normal with no elevated protein? but low glucose? and absolutely not evidence of CNS production of IgG synthesis?  The 1992 problems sound very much like an acute demyelinating encephalomyelitis.  Did they test you for Lyme?  The rapid and areas that have been demyelinating are not usual areas for MS.  Some of your systemic signs are autoimmune-like and things like antinuclear antibodies and anti-dsDNA antibodies might be a good thing to look at.  This would also fit the picture of steriods giving fast relief of the problem.  There are rapidly progressing types of MS, such as Bilo's but they have a characteristic MRI pattern and would have been picked up.  I am not sure what is going on but CNS lupus would be something I would investigate.  I am really sorry that I am not much help.

Sincerely,

CCF Neuro MD
Avatar universal
I should add VEP tests abnormal, 156 right, 104 left, last brain MRI shows multiple foci of increased signal in the cerebral white matter bilaterally, multiple esions are seen in a periventricular location, multiple corpus callosum lesions, and some white matter lesions are seen to have their long axis perpendicular to the long axis of the lateral ventricle. I also have an essential tremor  and an "internal" tremor. No bladder or bowel problems. Cervical spinal MRI shows hemangiomas at C5,C7, and T3. Intial bloodwork also showed neutrophilic leukocytosis. Sorry for this being so long, but I wanted to get as much info as possible to you.
Avatar universal
I'd think although your symptoms have the flavor of MS - sounds more like Lyme Disease. In all the test results you noted, you did not mention being tested for Lyme. Perhaps this is an avenue worth exploring.

Good Luck -
Avatar universal
Dear Tricia:

Thanks for the added information.  The MRI findings of "Dawson's fingers" can be seen in MS, but also other demyelinating diseases.  There is just something missing for your typical MS.  There really should be CNS synthesis of antibodies, and therefore the protein should have been elevated during the acute phase of the reaction.  The abnormal VEP on the right is suggestive of a demyelinating disorder of the optic nerve, also consistent with MS, but other things like sarcoid can give you an abnormal VEP, as well as TB.  Primary lymphoma is also a possibility but rather remote considering the length of time involved.  I would still vote for a vasculitis or autoimmune process.

Sincerely,

CCF Neuro MD
Avatar universal
I do not respond to steroids, either IV solu-Medrol 1000 mgs. x 3 - 5 days or to oral - highest dose 500 mgs. last year. I have had x4 lumbar punctures, IGG synthesis has always been normal, and normal protein. I was tested for Lyme with second tap, Aug 1993 (by Dr. Stillman) when he was in Seattle, negative, blood test for Lyme 1997, neg. Angiogram also negative. Thank you CCF Neuro and everyone. I understand a person can be negative for Lyme after steroids(?)
Avatar universal
I would do the Lyme blood test again, especially a Western Blot exam.  The antibodies increase over time.  By negative (HOW negative?). These tests are not very reliable and Lyme is primarily a clinical diagnosis.  If the CCF Neuro suspects Lyme then you should definately be investigated by a Lyme Literate doctor.  Most neuros are very conservative when it comes to a Lyme diagnosis, so if CCF Neuro Suspects it, there is a good chance that you may have it!  To find a LLMD near you go to http://www.lymenet.org/ and find a support group near you for doctor recommendations.  Be careful--Lyme is a religious topic to some people and you may find many fanatical lyme patients (many of whom do not have lyme disease at all). But the fact that the these symptoms started after a tick bite are rerally suggestive!

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