Hello--I am new to this site, but have found it to be useful reading as I embark into the testing underbelly of MS. For quite some time now, off and on, I have been experiencing very weak legs as well as a sensation of pins and needles accompanied by numbness on my right side. I also experience occasional burning sensations in my right arm and right side of face as well as what feel like cluster headaches...and sometimes when I try to hold a smile my cheeks will twitch violently. What bothers me the most, besides the weakness, are constant muscle spasms and twitches all throughout my right side of my body. I am a 33-yr old male and have lived an active and athletic lifestyle. These symptoms have taken me out of the gym and off the basketball court and it's quite upsetting because I feel like my body is starting to waste away.
I am not sure if this is of consequence, but my family has a long history of auto-immune disorders. My sister has MS, my grandfather had lupus, and my uncle suffered from CIDP (Chronic Inflammatory Demylenating Polyneuropathy. I have been going to the same Neurologist that my sister currently sees and he believed that the MRI findings were suspicious, but certainly not definitive. I have had an MRI done on my brain and spine; with and without contrast, and it showed minimal periventricular white matter changes in my Occipital Lobe. The spine appeared normal but I don't know if my doctor actually looked at the pictures. I believe only the radiologist did and my doc basically read me his report. When I looked at the pictures I had a lot of lights in my brain and spine. But I am no expert in the area so I guess I have to put my trust and faith into whoever looked at the pics.
Recently I had a lumbar puncture and the doc called me yesterday with some pretty vague results. His words were, and I quote, "you are in a grey area in that I cannot rule MS in nor can I rule it out. Come in and see me next week and we'll talk about it." I requested a copy of my report and do not understand the language.
The only comments made were "The patients CSF contains multiple restriction bands that are also present in the patients corresponding serum sample. We are unable to define whether these gammaglobulins are of systemic or intracerebral origin. The Clinical significance of a numerical band count, determined by isoelectric focusing, has not been definitively defined. The data should be interpreted in conjunction with all pertinent clinical and labratory data for this patient."
So...it sounds like there are O-bands in my spine, but the report doesn't say how many. It sounds like these bands match those in my serum sample. Correct me if I'm wrong, but if the bands match, doesn't that automatically rule out MS? If so, how can my neuro believe I am in the "grey area" still? Meanwhile, I am having another episode of weakness (my last one was about a month and a half ago) and I feel like I am chasing my own tail to get answers. I understand that in diagnosing MS, one has to take the entire big picture into account but I thought that matching bands would be good news. However, this also brings me to a different question: Why do I have O-bands in my spine in the first place? Shouldn't my spine be free of O-Bands if I were a healthy individual? If the bands in my spine match the bands found in my serum does that mean that something is making it through my Blood Brain Barrier? And if this is what is happening, is that normal or could it mean something else may be going on in my body? My report has several charts and measurements that I do not understand. If it is pertinent information I will be happy to dictate those values into a separate post, especially if it will help me make sense of this purgatory in which I seem to be stuck. I would very much appreciate any feedback from this community and I thank you in advance. All the best!
It would be a negative tap (from what you mention) with o-band in the CSF that are also in the blood serum (after comparison). Only when they find "unique" o-banding in the CSF, that are not in the blood serum can they state the banding is of CSF origin.
The doctor wants to add more clarification to this at your next appt. from what you mention of the phone call. This is a good thing.
Don't panic - just have your questions at the ready. And, hope you get some answers as to what could be going on.
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