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Multiple Sclerosis Message Board


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Ms ?
Nov 2, 2007
Hi everyone- My name is Tara and I'm turning 23 yrs old next week. I have been having strange symptoms for the last 2 1/2 to 3 yrs and have been diagnosed with lyme disease. However, I was on the antibiotics (IV rocephin) for 5 weeks and needed my gallbladder removed as one of the side effects. In the meantime, about 1 1/2 month ago, I had been having severe pain in my jaw radiating up to my ear which I had seen an ear nose and throat specialist that said it was neurological and referred me to a neurologist. My neurologist said that I had levido reticularis, trigeminal neuralgia and some hyperreflexia I believe. He did not repeat my MRI of the whole spine (all 3 levels) and brain which I had just had back in July since it was all negative, but sent me for a spinal tap and some more blood work instead. He said he did not believe I had lymes disease but rather an underlying autoimmune disorder. The spinal tap came back positive for oligoclonal bands and a high IgG Index level. He has not diagnosed me with MS but thinks it is definately and possibility now. I am really afraid because I know alot about this disease since I am an MRI tech and see the effects quite frequently on alot of patients. I am also really nervous now because my symptoms never stop, I always develope new symptoms meaning I might have the primary progressive form of the disease which I hear is more disabling and being so young and in my prime, this is very nerve reckening. I believe the lyme titers were all negative and that this doctor was just treating me based on my symptoms since I have looked at the labs myself. However, my LLMD (lime doc) wants me to continue forward with treatment even though it caused me unneccisary surgery and says that lymes mimics MS. I was wondering if any of you know if oligoclonal bands are positive in lymes? My western blot and elisa were both negative according to an infectious disease specialist and immunologist. I am really confused and scared at this point. Can MS be diagnosed through a spinal tap culture alone and somewhat abnormal neurological exam? I thought there had to be 2 seperate attacks and a number of plaques or lesions seen on the MRI for MS to be diagnosed according to criteria?
My symptoms are as follows: heat intolerance, muscle twitches all over my body, frequent urination, levido reticularis (mottled skin), fatigue, shortness of breath, skin changes, raynauds phenomenon (blue fingernail tips), butterfly rash when exposed to light/and or heat, rashes all over my body, low grade fever, feeling constantly warm/flushed in the heat, trigeminal neuralgia, hyperreflexia, lhermittes sign, and recently a new symptom (within the last 5-6 months) is numbness and tingling in my legs upon walking/exercising. However, all the other symptoms have been present for 2 1/2 years (no remitting stages.)
I've had an extensive workup. I had seen a neurologist when 3 months into the onset of this all for the muscle twitches and he ordered a nerve conduction study test and emg which were normal. He did not feel it necessary that I had an MRI because he said I had a normal neurological exam and no evidence of weakness or numbness. However, being a student at the time in radiology, I convinced my friends to run a brain scan which was negative according to them. (which as a tech, you can see plaques on the flair images of the brain.) I have had repetative MRI's done by my coworkers at work (all normal) according to us of my brain and all levels of my spine however my immunologist laughed at me when I told him I had performed these test on myself and ordered a "legit" MRI of the whole spine and brain which was negative. I saw a rheumotologist and she was convinced I had lupus or some other connective tissue disorder. She did the complete lab workup (over 30 blood samples) for scleroderma, lupus, mixed connective tissue disorder, dermatomyositis, RA, just to name a few. All my results were again normal. I went to see an endocrinologist and he did not find anything, I saw an allergist and an infectious disease doc who ran there workup which everything was normal. I then went to see the immunologist who found clamydia pneumoniae (walking pneumonia) NOT an STD and gave me oral antibiotics for a few months to cure this infection. I must of picked it up in the hospital or something.
I am scheduled to see the neuro again in mid november of this month so I am really anxious to see what he has to say. He does not believe its lyme, and does not feel it is necessary to continue with treatment especially after my unexpected side effects of surgery. Thanks for listening.
Tara





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