Aa
Positive for CNS inflammation but no visible lesions...
Has anyone heard of having a positive LP with 9 O-bands and an elevated IGG index (over 3 times the normal range) and yet have no lesions? Any alternate diagnosis for similar results?They have ruled out all other possible diagnosis including Lymes and Lupus...did a screen for cancer. I was in the MRI machine this last time for 2 1/2 hours! UGH! Not again any time soon....
Thanks for the responses...I have been going to the MS clinic at Johns Hopkins in Baltimore because my neuro here in NJ felt that was the best in my "area". So i AM seeing a neuroimmunologist. She did do repeat MRIs of cervical, thoracic and lumbar spine after the positive LP came back because my brain scan was normal. These were done with and without contrast. However i did question the type of machine and was told the radiologist was satisfied with what we had.
She took at least 35 vials of blood and did an EMG when ruling out other possible diagnosis along with the LP. I have had 2 definitive "episodes" over the last 4 years but have always attributed all my other pain to a bad back - degenerative disc disease and surgery at age 24 from a car accident.
i do not know the difference between a sclerosing diseases or an inflammatory one. I do know she said the results were indicative of inflammation of the CNS rather than systemic but thanks for that advice.
As of right now she (my doc) is assuming that lesions will eventually show up and unless i have a major episode that brings me to the ER i am to go back in 6 months. My biggest issue right now is determining where my pain originates and whether or not it is worth worrying about...so used to pushing thru just hope i am not doing more harm than good sometimes...
She took at least 35 vials of blood and did an EMG when ruling out other possible diagnosis along with the LP. I have had 2 definitive "episodes" over the last 4 years but have always attributed all my other pain to a bad back - degenerative disc disease and surgery at age 24 from a car accident.
i do not know the difference between a sclerosing diseases or an inflammatory one. I do know she said the results were indicative of inflammation of the CNS rather than systemic but thanks for that advice.
As of right now she (my doc) is assuming that lesions will eventually show up and unless i have a major episode that brings me to the ER i am to go back in 6 months. My biggest issue right now is determining where my pain originates and whether or not it is worth worrying about...so used to pushing thru just hope i am not doing more harm than good sometimes...
Hi there kcmuss -
Aaaah! I have totally clear MRIs (four of them!!!) and an LP in December showed up as 10 o-bands and extra white cells (no elevated IGG for me). But I'm afraid I have no answers to share with you... if I do get them, I absolutely will! This is SO frustrating. They've tested me for cancer, lupus, a whole bunch of autoimmune disorders, but everything so far looks good.
Right now I'm a little worried about chronic meningitis. Now this is just my theory, I haven't run this by a neurologist or anything yet, so this could be totally wrong - but it matches my symptoms really well and would explain the LP. I'd also like to talk to a doctor about neuro-Behcet's. This is horrible; I've been doing all this research, trying to become a diagnostician basically when I am definitely not a doctor... but the doctors all seem so clueless! I mean, it just seems like they really don't know what these kind of results mean. Like it's not covered in the books or something.
I really hope you get some answers soon! I've gone searching through this website's archives for people with similar results (positive LP and clean MRIs) and I've found very, very few people with this problem. I don't think it crops up much. I wish you lots of luck!! I really really do.
Louey
Aaaah! I have totally clear MRIs (four of them!!!) and an LP in December showed up as 10 o-bands and extra white cells (no elevated IGG for me). But I'm afraid I have no answers to share with you... if I do get them, I absolutely will! This is SO frustrating. They've tested me for cancer, lupus, a whole bunch of autoimmune disorders, but everything so far looks good.
Right now I'm a little worried about chronic meningitis. Now this is just my theory, I haven't run this by a neurologist or anything yet, so this could be totally wrong - but it matches my symptoms really well and would explain the LP. I'd also like to talk to a doctor about neuro-Behcet's. This is horrible; I've been doing all this research, trying to become a diagnostician basically when I am definitely not a doctor... but the doctors all seem so clueless! I mean, it just seems like they really don't know what these kind of results mean. Like it's not covered in the books or something.
I really hope you get some answers soon! I've gone searching through this website's archives for people with similar results (positive LP and clean MRIs) and I've found very, very few people with this problem. I don't think it crops up much. I wish you lots of luck!! I really really do.
Louey
Does your MRI report say anything about hyperintensities or bright areas or anything like that. Has your neuro explained these results to you? If the High Igg Index is in your spinal fluid it is important as you know it is either one of the sclerosing diseases or an inflammatory disease.
ess gave you some really good advice.
Do you have symptoms of MS?
ess gave you some really good advice.
Do you have symptoms of MS?
Welcome to the forum.
Your situation is kind of unusual, certainly. So I'd be asking some tough questions about the MRI. Do you know what strength the machine was? A 3Tesla is what you need. Were MRIs of brain, cervical spine and thoracic spine done? With and without contrast? Was the MS protocol for MRI used? This insures that no sections are missed.
I don't know your symptoms, an important factor, but also I'm not sure what other conditions can cause your LP results. You might want to make sure that your MRIs have been read both by a radiologist and your neuro. Be proactive and switch doctors if need be.
Good luck to you.
ess
Your situation is kind of unusual, certainly. So I'd be asking some tough questions about the MRI. Do you know what strength the machine was? A 3Tesla is what you need. Were MRIs of brain, cervical spine and thoracic spine done? With and without contrast? Was the MS protocol for MRI used? This insures that no sections are missed.
I don't know your symptoms, an important factor, but also I'm not sure what other conditions can cause your LP results. You might want to make sure that your MRIs have been read both by a radiologist and your neuro. Be proactive and switch doctors if need be.
Good luck to you.
ess
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