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Possible CNS Sjogren's or MS??
Hi there, I need help, advice, anything...........
Experiencing left hemibody tingling and numbness, retobulbar headaches, sporadic dizziness,and minor visual disturbances(1 espisode of tunnel vision, and random horizontal nystagmus) and recurrent severe low back pain for 8 months.
I have had numerous tests....2 MRI's of head and neck with and without contrast, 2 MRI's of lumbosacral region, lumbar puncture, and a host of blood work as well as NCS and EMG.
Blood was normal except for Lyme P-41 Ab present, elevated B-12(1096) 1st Head and neck MRI showed 1 lesion, 2nd showed 5 lesions,(frontal white matter) (Report said most consistent with microangiopoathy) Normal spinal fluid.
Lower spine MRI's showed slight bulging disc and some degeneration, but Dr. said a 42 yrs old, that is normal.
NCS was normal, but EMG showed lumbosacral nerve root inflammation (polyradiculoneuropathy)
Neuro at first was thinking MS, but now he says he's not..., said he's not sure what is going on,(mentioned Sjogren's and Diabetes, but I tested negative) stated he will look back over chart to see if he's missed anything..... Possibly too early to show up in Labs?????
Is CNS Sjogren's similar to MS???
Is it common?
Thanks, Mel
Experiencing left hemibody tingling and numbness, retobulbar headaches, sporadic dizziness,and minor visual disturbances(1 espisode of tunnel vision, and random horizontal nystagmus) and recurrent severe low back pain for 8 months.
I have had numerous tests....2 MRI's of head and neck with and without contrast, 2 MRI's of lumbosacral region, lumbar puncture, and a host of blood work as well as NCS and EMG.
Blood was normal except for Lyme P-41 Ab present, elevated B-12(1096) 1st Head and neck MRI showed 1 lesion, 2nd showed 5 lesions,(frontal white matter) (Report said most consistent with microangiopoathy) Normal spinal fluid.
Lower spine MRI's showed slight bulging disc and some degeneration, but Dr. said a 42 yrs old, that is normal.
NCS was normal, but EMG showed lumbosacral nerve root inflammation (polyradiculoneuropathy)
Neuro at first was thinking MS, but now he says he's not..., said he's not sure what is going on,(mentioned Sjogren's and Diabetes, but I tested negative) stated he will look back over chart to see if he's missed anything..... Possibly too early to show up in Labs?????
Is CNS Sjogren's similar to MS???
Is it common?
Thanks, Mel
I can offer you this advise based on what I personally have experienced. This again is only My Opinion.
I have a MS diagnosis...for many years, but am now treating with antibiotics. I did a lot of reading about the similarities between MS and Lyme. I sought out a doctor who specializes in lyme, got a blood test from a lab that tests for all the bands, and eventually was clinically diagnosed with Lyme.
You mention band 41 being positive? What about all the other bands? If "where" you were tested for lyme didn't test for all the bands, you might want to consider getting a Western Blot?
Lyme isn't easy to diagnosis, but if we the patient are given a fair opportunity at testing...we might be able to get solid answers for why we are sick.
Best to you,
tory
I have a MS diagnosis...for many years, but am now treating with antibiotics. I did a lot of reading about the similarities between MS and Lyme. I sought out a doctor who specializes in lyme, got a blood test from a lab that tests for all the bands, and eventually was clinically diagnosed with Lyme.
You mention band 41 being positive? What about all the other bands? If "where" you were tested for lyme didn't test for all the bands, you might want to consider getting a Western Blot?
Lyme isn't easy to diagnosis, but if we the patient are given a fair opportunity at testing...we might be able to get solid answers for why we are sick.
Best to you,
tory
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