On my other posts kind of explain the situation in depth but after almost a year i still have...
-Tingling in face, tongue,hands
-Severe pains in my neck,head which are mostly rite on top or at the base of my skull
-feeling off balance
-feeling of burning sensation on tongue and in head
-neck pain, lower back pain
I AM IN PAIN ALL THE TIME, not just when I stand up I dont think but it does feel like pulling on my brain
have seen 3 nuerologist
a infecious disease,cancer dr,autoimmune dr and stayed in the hospital last year
test done were
-mri / mra of brain,neck,lower spine
-ct of brain and mri after the spinal tap
bloodwork showed b12 deficiency and vit d but this pain makes me not get up in the morning
i cant drive im miserable and have a 3 month old. i have not had any test for about 7 months
because drs dismissed me and said it was stress
COULD IT STILL BE A CSF LEAK? NO TUMORS DETECTED OR ANYTHING ELSE..I DID
HAVE AN INJURY 10 YEARS AGO BUT IT WAS TO MY ARM AND WAS A COMPOUND FRACTURE
RITE ABOVE MY ELBOW - I NEED AND WANT HELP SO BADLY.
Hi there. This does not sound like a csf leak, the vitamin deficiencies need to be addressed. You have to be investigated for a chronic demyelinating disorder, multiple sclerosis where the disease phase is characterized by active phase and remissions. It has multiple symptoms and signs and is a diagnosis of exclusion. The symptoms of multiple sclerosis are loss of balance, muscle spasms, numbness in any area, problems with walking and coordination, tremors in one or more arms and legs. Bowel and bladder symptoms include frequency of micturition, urine leakage, eye symptoms like double vision uncontrollable rapid eye movements, facial pain, painful muscle spasms, tingling, burning in arms or legs, depression, dizziness, hearing loss, fatigue etc. The treatment is essentially limited to symptomatic therapy so the course of action would not change much whether MS has been diagnosed or not. Apart from clinical neurological examination, MRI shows MS as paler areas of demyelination, two different episodes of demyelination separated by one month in at least two different brain locations. Spinal tap is done and CSF electrophoresis reveals oligoclonal bands suggestive of immune activity, which is suggestive but not diagnostic of MS. Demyelinating neurons, transmit nerve signals slower than non-demyelinated ones and can be detected with EP tests. These are visual evoked potentials, brain stem auditory evoked response, and somatosensory evoked potential. Slower nerve responses in any one of these is not confirmatory of MS but can be used to complement diagnosis along with a neurological examination, medical history and an MRI in addition, a spinal tap. Therefore, it would be prudent to consult your neurologist with these concerns. Hope this helps. Take care.
I had a mri/mra done of my brain twice . both with and without contrast. A full back MRI and they were looking for MS. Nothing showed to be irregular in the spinal tap results :( I have seen 3 nuerologist who all looked at my films and did not see anything.
Only thing they saw last year was abnormal antibodies but said that after I took doxy I should not have these issues so they dissmissed them being connected to my now symptoms./brain issues.
Have you consulted a LYME specialist? Since you mentioned doxy and antibodies you need some one who thoroughly knows about LYME. Not many out there. I have most of your symptoms but mine happened after head injury. I can understand how it feels like. So far no help for me from doctors/meds/therapies (2 years and counting). Few specialists asked do I have LYME disease and some also did test for LYME in spinal fluid, blood etc., and found nothing.
LYME most of the time doesn't show in tests. Watch the movie "Under our skin". Some folks even did Stem Cell Therapy after medical community gave up of them.
I have not seen a lymes specialist. I did see an infectious disease who did the antibody test and it came back as unspecified antibodies on the titer.he could not explain why the doxy made me feel better though.
If doxy made you feel better then you sure should pursue on that path. For some one without infection doxy should make them feel bad. Unspecified antibodies.....you should get a copy of all your reports and investigate with another doctor. If I were you I would pursue on that path. Medical community doesn't believe in Chronic Lyme disease even in hospitals like John Hopkins, Mayo etc., Maryland is infamous for Lyme bites. My symptoms resembles closely to LYME disease and some doctors wonder I have LYME disease even though my tests are negative.
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