Negative oligoclonal bands

[greaterexp]

My CSF came back negative. Information seems pretty limited about this, and much of it is conflicting. There seems to be some sort of consensus that about 5-10% of folks who test negative still have MS, but some end up having another demylenating disease.

My MRI showed multiple demylenating lesions, and my symptoms match MS.

Now what? My neurologist wants to do further testing, which we will discuss at my appt. on Dec. 9. What kind of testing should I expect? I've decided not to tell my family about the confusing results, since that could really throw them. I'm having a hard time wading through studies to find any answers.

Forgive me for being a "post hog."

Ideas?

[WAshingtongirl]

A neg LP result doesn't mean you don't have MS, greaterexp. I had 2 over the years. One was positive and the other wasn't. There is no ONE definitive test for it. I'm surprised your neuro finds this inconclusive. I would assume other tests (for lupus, etc.) had already been done and those diseases that mimic MS were ruled out prior to your diagnosis.

I'm sorry. I know it's hard to do, but I pray you can push this aside. Getting an MS diagnosis is hard enough. Having it questioned after the fact is equally, if not more, disturbing. I know. It took 9yrs before I was diagnosed. I was then undiagnosed 2 years later. Then diagnosed all over again.

So let your doctor ride that rollercoaster on his own. Enjoy your family and your Thanksgiving together. Come back and voice your fears and frustrations as often as you need to. And let us know when your next appointment is. Sending you a hug. 💕

[erash in reply to WAshingtongirl]

I agree with all Tutu said. Big hugs to all and u r NOT a post hog.

MS leaves us with so many unanswered questions.

[luckydog9 in reply to WAshingtongirl]

Hi I am new to this site. I am feeling overwhelmed right now. After about 8 years of off and on symptoms I ended up having an MRI that looked suspicious for MS. I went to an MS center in Boston MA and had more testing in which the doctor diagnosed me with MS with a negative lumbar puncture in May of 2013. The doctor at this center felt I had MS and said the lumbar puncture was done to rule out other diseases that can mimic MS in addition, having bands would have been another confirmation for her that I had MS. I sought a second opinion at another Boston hospital (MS Center) in which that doctor agreed on the diagnosis. I live a distance from Boston so I switched to a neurology center closer to where we live but still a distance. I have treated with three different MS medications over the last almost six years as well as some solumedrol treatments. We have an MS center about 20 minutes from our house that I haven’t been able to get into. I finally got an appointment with a doctor there and went to my first appointment two weeks ago. This doctor has now sent my diagnosis of MS which took me forever to accept and get (sounds weird because I don’t want MS but I don’t want it taken away and sent back into limbo land again) into question I fit the criteria in his opinion but since my lumbar puncture did not show bands in May of 2013 he thinks it’s “grey” for him if I had bands he said he would not question the diagnosis. Now I sit here everyday trying to figure out do I have MS or don’t I. I do not know if I should fully switch to this doctor or not I really liked him but I am nervous now. Obviously if I don’t have MS I should know that but how could three other doctors be wrong and one right... or do I listen to him and potentially lose my disability benefits and still not be able to work due to how I feel every day. I have no spinal lesions never have but have many brain lesions both cerebral hemispheres including cortical and juxtacortical lesions. I am really struggling now and don’t want to end up having the diagnosis thrown out to find out later that I in fact have MS. This is as troubling for me mentally as when I knew something was wrong with me for all those years and was always told I was healthy and just burning the candle on both ends.

[erash]

My CSF was also negative (I insisted on this test). My MRI is demyelinating disease (many lesions).

[Judi4]

greaterexp This doesn't mean anything, because they found O bands in my LPand the MS specialist said they are actually not relying on a LP as a confirmation of MS.

[jimeka]

My doctor would not let me have a LP, he said that there wasn't enough evidence available to support it being conclusive enough for ms. So you enjoy your thanksgiving and don't think about anything until your next appointment. Praying for you, blessings Jimeka 🌈

[cheshcat]

I'm so sorry it wasn't a conclusive test. MS seems to be a slippery eel of a thing to pin down.

My mom was in a full blown horrible RA flare and her ANA test was negative. Remember, it's only one test.

Hang in there and enjoy your thanksgiving day ❤️!!!!!

[Jesmcd2 CommunityAmbassador]

greaterexp l wouldn't worry too much about it. My Dr wouldn't even give me one. He said that they weren't always accurate and the MRI already proved it. So it was unnecessary.

Just enjoy your holiday ♡

And don't stress!

[Iona60]

I've always wondered if they show up in the LP when not in a flare.

[greaterexp in reply to Iona60]

I read in only one study that they are less likely to be present during a remission, but other papers stated that they are always present despite symptoms. Who knows?

[Jesmcd2 CommunityAmbassador in reply to greaterexp]

Can l make a suggestion greaterexp ? Stop reading things on the net. And wait til you talk to your Dr. You are going to stress yourself out. Your doctor will hopefully have the answers *hugs* ♡

[greaterexp in reply to Jesmcd2]

Good suggestion. The tech from the neurologist office called about the result and actually suggested I look up some things, so I'll be better prepared for the office visit in Dec. I only spent about an hour looking, and I haven't looked since. I agree that one can be easily overwhelmed with information from the net, and a fair amount of it is unreliable.

You all are so helpful here!

[Jesmcd2 CommunityAmbassador in reply to greaterexp]

Why would a tech call with results? I guess lm confused about that anyway. I had a tech call me once about some sinus x-rays, and he got fired cause he told me that it looked like cancer. Freaked me out! And he had no right to do that. So lm just confused lol like always

[greaterexp in reply to Jesmcd2]

I understand what you're saying. They offer online access to test results as soon as they are available, so I already knew the results. She was letting me know that the doctor would be looking at doing more testing, perhaps even at the next appt. It may have been an RN calling under directions from the doctor. There were a few instances when, as an nurses, we would phone some results to patients. Certainly never something like cancer! Things have sure changed, however. I see medical technicians giving immunizations. Back in my day, one had to take a pharmacology class before taking on that responsibility.

[Jesmcd2 CommunityAmbassador in reply to greaterexp]

Ahhh l gotcha greaterexp , l always forget about the online results. Which is stupid cause l just used them about the shots. Duh on my part lolol

Sometimes I feel out of place here and confused. I didn't have all this testing done, and it didn't take me yrs to get a dx'ed. I was just tossed in.

[greaterexp in reply to Jesmcd2]

I feel the same way, but you certainly aren't stupid! Having test results available online is new to me! I was a nurse in the dark ages, so there is so much that keeps changing. It's hard to keep up with!

[Judi4 in reply to Iona60]

Iona60 I believe the O bands are always present. This is how they rule out other diseases.

[AngieRowe]

My bands were inconclusive too but I have MS diagnosis. Doc said sometimes does not show but that does not mean you don't have MS. I have 1 brain lesions and 1 spinal lesion. And lots of symptoms.

[greaterexp in reply to AngieRowe]

My brain MRI showed multiple lesions. (At least they found a brain--now I have proof!)

[Bygonelines]

The other thing to remember even if you have the O bands is that MS is not the only thing that can cause them. For instance my neuro told me the pneumoncoccil meningitis that I had at age 3 could have caused at least some of my o bands. He thinks it probably did because I have more o bands than normal with an MS diagnosis. So, like everything else O bands are not definitive for or against MS. Aren't we the lucky ones to have a disease that loves to play hide and seek. The slippery little devil. LOL.

[pmbevac]

My CSF was negative as well. That is probably why my neurologist in the UK was reluctant to give a diagnosis of MS. My neurologist here in Montana didn't think it was a reason to not give the diagnosis and did so based on symptom history and MRI results.

[Shamafla in reply to pmbevac]

Hi. I saw your post on a thread about your negative LP. I wondered where in MT you saw a neuro. I had a negative LP for bands but had elevated proteins. I am wanting to find a neuro who specializes in MS in WY or MT but haven’t had luck. Thank you.

[pmbevac in reply to Shamafla]

Hi shamafla, I’m in Billings. i believe there are a couple neuro’s who deal with MS at the two local hospitals. Not sure who is at St. Vincent’s but my neurologist is Dr Sarah Qureshi at Billings Clinic. I don’t know if she specializes in MS but she has a sister with MS so is quite engaged.

[pmbevac in reply to pmbevac]

Shamafla

Apparently Dr. Qureshi does specialize in MS, and as far as I can see she is the only one in Billings.. She has a video you might want to watch on the Billings Clinic website.

billingsclinic.com/services...

Direct link to the video.

youtu.be/HuW5RfKp7ts(Not working as expected?)

[Shamafla in reply to pmbevac]

Thank you so much. I forgot what sight I asked the question on and just stumbled upon this tonight. Sorry it took so long to respond. I will see if I can get an appointment with her. I am still struggling in getting an accurate diagnosis. Just had a cervical disk replacement in December and my symptoms have not improved. It’s so very frustrating. Thank you. Is this the doctor that gave you your diagnosis with the negative spinal tap?

[kdali]

Hog away! I wish I could help you, but my eyeballs diagnosed me before the scans did! I’ve never had an LP. Did you have any enhancing lesions? What was the neuroradiologist’s impression on your MRI report?

[greaterexp in reply to kdali]

It's been awhile since I went through the diagnosis process, but the original MRI showed "multiple lesions," without a lot more description, other than none were "lighting up," as they say. I'm having another MRI very soon and am really looking forward to seeing if there are any changes. I don't appear to be in an exacerbation right now. I think MS was about the only thing that matched my symptoms and MRI at that time, but I still wonder at times if there is another disease process going on. I may never know for sure. I doubt that it was truly a neuroradiologist who interpreted the MRI.

[pmbevac in reply to greaterexp]

Who interprets the MRI seems to make a big difference. Originally I thought I had 1 spinal lesion, now after a couple more MRIs 3 more have been reported and all were reported as existing, not new. My neuro said they were slight but always there, just not reported. When I look at the MRIs I can see the first one, but not the other 3 so I think maybe they are easy to overlook.

[kdali in reply to pmbevac]

I agree! Do you feel any different now that you know there were more? I ask because I wanted to know every detail early on, and now I don’t really care because it doesn’t make a difference....as long as they all stay inactive and no new ones come up. I have 5 spinal cord lesions and my last one was an oldie that got mad again. I find that number worrisome but 🤷‍♀️

[pmbevac in reply to kdali]

Actually I don't feel any different but I wish they had been all found and reported at the start. I found it a bit confusing when I read the reports and found out I had these lesions that were new to me but reported as no change. Had I known I wouldn't have done anything different - maybe worried more about the possibilities of flare ups?

[kdali in reply to greaterexp]

Unfortunately it probably was one and they just said, yep, looks like MS lesions. It’s happened to me twice and I knew who it was reading, so I switched hospital systems and got a legit read on my last one. I hope everything is the same on your new one!