Hmm, this is strange. Three unique o-bands is not considered a normal result. Unless, that is, the Mayo Clinic is doing the interpreting. For reasons not understood, at least not here, the Mayo insists that four or more o-bands are needed. But in any case, lp results are not diagnostic for MS and are not a requirement.
Assuming you are not being seen by the Mayo, I think you need to contact your neuro for an explanation. Good luck.
Yes I believe the range was 4 bands for a postive result (I'm also unsure of what a positive result means as well though). I'm waiting for my follow up appointment with my neurologist next month. I only have to go through a nerve conductive study until then, but most of my major syptoms have dwindled down. Thanks for your reply and good luck. Many blessings.
Went for my diagnosis vist today to fund out by my doctors assistant that I fo not have ms. Its a two hour drive and I did not even get to ask him any questions. Very emotional for me today. I was charged for a doctor's visit but got his assistant instead. She told me my NCS test was normal and my spinal tap was normal with 3 Obands (1 more and it would have been ms) and that the doctor noted that I should see a speech therapist! I was referred to him by my ENT and his speech therapist! My voice is fine, except when I have spasms. Im now having double vision that comes and goes with all the other issues I have. She wanted me to come back to follow up with the doctor after seeing and hearing me for herself. She also sent my records off to another neurologist specialized in movement disorders. Sorry had to vent. Its really ***** paying to see your doctor to ask questions and get answers they not show up. Guess I'll have another month or two to get my questions answered.
Do* so many typos. I did not use foul words were the * symbols are. I apologize to all who read this and took me as hateful or rude. Im generally a pleasant person, just had a hard time today.
I'm sorry you had such a rough day. It's so frustrating when you're hoping for more answers and don't even get the chance to ask questions!
I was diagnosed without a lumbar puncture. My first neurologist and I didn't "click" so I moved on to another. She and I have a much better relationship and she also works with a higher percentage of people with MS. You might want to think about a second opinion with someone who specializes in MS.
Hopefully a second opinion will help. I hope you find answers soon!
If the MS clinic or where ever you went, is saying you don't have MS simply because of your LP results, then they are way behind the world wide standards when it comes to diagnosing MS!
These days, to have dropped MS from being a potential cause, there would usually need to be a lot more diagnostic evidence inconsistent with MS, than just their LP results. I did read through your other posts but couldn't actually work out if you did have any abnormal test evidence suggestive of MS.....
I realise you've mentioned periventricular brain lesions, some abnormal bloods ie high zinc, red blood count and haemoglobin but lower levels of vitamin B12 and vitamin D. You also mentioned secondary dystonia but what you fully described confused me a bit sorry, i thought you were meaning spasmodic episodes that effected the muscles controlling speech but you could of been talking about something else too. [My confusion with the taste, smells, anxiety, shoulder back pain etc sorry]
Anyhooo getting my head back into what i was trying to say, there isn't anything you've mentioned symptom wise or test evidence that is specifically suggestive of MS and it would probably be a good idea to read through your test results and look to see if you did you have clinical signs show up in your neurological exams, abnormal VEP, MRI's etc to see if there is more than just your LP that's taken MS off your possible list of causes......
PS a second opinion with an MS specialist, is always a good idea if MS of concern.
The four+ standard set by Mayo is frustrating and it is adopted by a number of labs now, from what i understand. Their rationale is the testing process the way others do it is less precise and Mayo's test will actually show 'more' o-bands.It's a strange way of twisting the numbers. Anyway, the o-band count is not what is used for a diagnosis of MS anyway, it can just be for supporting the diagnosis. About 15% (if I am remembering the number correctly) of people with MS do not have obands show in the CSF at all.
The second opinion is a great idea- I hope it is with a doctor who will stop and listen to you, your concerns and your history and approach it with an open mind.
Asfor the cuss words, don't worry about those ** signs - there are a lot of words that set off the censor software and block it out - it is hard to talk about some MS signs without using words the censor tool doesn't like. For example, if you talk about pin pr icks (without the space) it will always block the second word. :-)
take care and good luck with this next step, Laura
Thanks to everyones comments and feedback. Im feeling well today but I still get some type of seizures where I am awake. I have blacked out once though with them. The spasms affect my throat wherw I'm incapable of speaking clearly or at all. Ive had MRAs that look good as well as VCS of my legs. My MRIs have lesions in the corpus callosum/ preventricle areas as well as cerebral cortex and throughout cerebral hemisphere.(2 small ones as well on my cerebellarm) Ive posted a few pictures if anyone would like to veiw. Some are old and some are new. Im getting a second and possibly a third opinion as well. Im ready to go back to work and get some sort of treatment. I have a positive babinski reflex in my right foot, ataxia, and no reflexes in arms. Migraines with auras or auras with seizures/spasms. Clonazapam helps. I have an appointment with a movement disorder neurologist specialist March the 4th. Looks like more test are coming I have had any gentic testing or my veins checked (forgot what thats called. I diffently have ADD and am on medication for that and anxiety which is why I have clonazapam. B12 and D levels are good for now. Sad thing is my psychiatric clinic went bankrupt without notice and my medical files are lost .I have to start all over with a new doctor and hopefully get more meds before I run out (few clonazapam left but out of ADD meds). Thankfully my family doctor gave me one refill until I go back to the new Behavioral Clinic. Sorry my story is all over the place, my brain is all well. Wish me luck and many blessing to you all. Ill post udates along the way. Thsnks again for your help and support, Criddybuggin
Excuse my typos. 1st I have not* had any gentic testing or viens tested
2nd my spasms affect my throat neck ribs back arms hands and legs. Mostly upper body. My eyes go hay wire lokking around or rolling back in my head. I try to keep eyes closed. My right side of mouth droops down mostly but sometimes up. Left left as well but not nearly as much as the right. My left shoulder jumps up and down vigorously as well as my right but right not as much. Both my arms contort and become ridgit and hands. Fingers tremor or become ridgit. My ribs arms lower back and neck (neck shakes and turns to the side) hurt the most when they become ridgit. It has last up to half an hour or longer but clonazapam shortens them down. Ive had up to 6 a day but usually before my cycle is supposed to start. Anytime I get hot or anxious I have similar episodes but they do not hurt as much as I take my meds as soon as I get an aura (weird smell, objects moving, seeing colors, double vision, or eyes start dancing) As you see my picture I posted I was very healthy and active years ago. I don't understand or know whats happening but I do know God is looking over me and all of you as well. I have faith all of our questions will be answered one day. God bless you all.
3rd *brain is not well, Im very forgetful.
I've had two lumbar punctures, and no o-bands. No genetic testing either. I didn't realize genetic testing was even done, outside of academic circles.
Me either. I recently found out that my mother's side of the family has a history of parkinson and seizures but I thought parkinson's was considered an "old person" disease. I believe Michael J Fox was diagnosed when he was young though. Thanks for your comment. If anyone has the time to look at my mri photos could you tell me what you think. I think dome of you may know more about mri pics than I do. Thank you all, Criddybuggin
Nonone will mind seeing your mri images, but we're not qualified to read them. What I did was compare mine (and the radiologist report) to images I found online. I'm not trying to discourage you at all, but our opinions would be just that-opinions.
Here is a true story that I've told before...
20 years ago, during what turned out to be my first MS episode, I was sent to get images of my brain. This was Pre-CD and I picked up the films to bring to my neurologist. I sat in my car and pulled them out. The first thing I saw was a large black spot right at the base of my brain.
That's it, I thought. Brain Tumor! I'm a gonner! When I got tot the doctor he but the film up into the light box. He immediately pointed to the exact same black spot. "Your blood flow looks excellent." he said. :-)
That was the last time I practiced radiology :-)