Negative O bands, elevated CSF protein

[Tigerlilly81]

I had multiple periventricular lesions show on an MRI in 2015 and one new small lesion show up on my MRI the end of 2018. Doctor did a spinal tap looking for O bands. I was negative for O bands but had slightly elevated CSF protein.

Did any of you have elevated CSF protein without O bands?

[ahrogers]

I had O bands but don't remember if my protein was elevated. My spinal tap was back in 2014 so can't remember that far back.

Have you been on a DMT? If so I wonder if that would affect the results. My guess would be yes.

My first brain MRI said at least 10 lesions so I assumed they stopped counting at 10. Subsequent ones just say stable with no mention of the number. My progression has been in my spinal cord.

I have not had another spinal tap and would prefer not to unless it provided info that would potentially change treatment as that was way worse to go through than the MRIs

Did your doctor interpret what the results mean?

[Tigerlilly81 in reply to ahrogers]

My first MRI showed several periventricular lesions.

He said my second MRI only showed one punctate lesion in the right parietal lobe and the spinal tap only showed slightly elevated total CSF protein. He felt that none of the results supported a diagnosis of MS.

As of right now my symptoms are only obvious to me. Largely balance and coordination "vertigo" , Dysesthesias, limb weaknees and fatigue, tinnitus, random hearing loss that comes and goes.

Weird muscle twitching mostly left side and around my ribcage. Like for the last 2 weeks my upper left eyelid has had this weird crawling sensation. Last summer my arms kept going numb. But my reflexes are strong.

I had Evoked Potential and another test that looked for reduced signals from brain to muscles "I don't know the name of it". It did show a slight reduction on the left side. And I have vestibular problems.

We ruled out Lyme, Lupus, Myasthenia gravis. Doc is leaning towards this being more psychosomatic in origin.

[ahrogers in reply to Tigerlilly81]

So the other periventricular lesions are no longer there? I would have to look up the function of the right parietal lobe to see if it could cause your symptoms.

That is the hard part of neurologic problems is it is mostly ruling out the cause as symptoms can be the same in so many different problems.

Maybe a second opinion at a reputable institution would be able to help sort it out.

It has to be tough not knowing the problem. I was fortunate to have all the tests show MS when I first saw the neurologist.

They might continue to do MRIs at certain intervals to assess things. Did they also scan your cervical and thoracic spine? I had more lesions in my cord than my brain. The spinal cord lesions lead to more symptoms than brain lesions. The brain has a lot more reserve to make up for the damage. If your spinal cord hasn't been imaged I would highly recommend having it done

[Tigerlilly81 in reply to ahrogers]

Yes he asked me to get more MRI's. Just waiting for the appointment on the 3rd. The periventricular lesions showed up in 2015, I'm not sure if they are not visible or gone. He did not mention them recently.

[ahrogers in reply to Tigerlilly81]

Hopefully the new MRIs will shed some light on what is going on

[Tigerlilly81 in reply to ahrogers]

Well, my MRI was cancelled because the doctors office never provided the authorization number to the radiology office. Then I learned my neurologist office closed and that was why. So now I am having to go to a new neurologist on the 19th. Very frustrating.

[ahrogers in reply to Tigerlilly81]

That sounds very frustrating! I hope you like the new neuro and get some answers! Keep us posted please 😁

[CV97]

My MS journey had a rough start. I was 'diagnosed' in ER before I had even had any MRIs. Unfortunately, once the diagnosis is out there, you can't get drs to look further. I landed at the (ER) Neuro's office with him evaluating those MRIs and saying things like "knowing what we're looking for" as he pointed out "suspicious" spots. He was exceptionally narcissistic and I refused to see him again. My 2nd neuro told me later that there was nothing on those brain MRIs and ordered a spinal tap. The spinal tap was performed 4 months after initial ER trip/diagnosis. My CSF protein was at the highest end of 'normal' and Olig bands were interpreted as "pattern suggests peripheral inflammatory response." Unfortunately, the 2nd neuro left the practice unexpectedly and I ended up with a 3rd neuro. 3rd Neuro ordered a Visual Evoked Potentials test, which I had to do twice because the testing equipment messed up the first time. I think I rocked the first one that didn't count. There was a light in the corner messing with me the 2nd time (I'm sensitive to lights in the dark), so I wasn't surprised that it came back with very slight delay on one side. Sought opinion of MS Specialist in Chicago. At that appointment, he officially diagnosed me with "a touch of MS". Now, I've never heard of that type of MS, but I assume it's technically RRMS, although 2.5 years later I still have never heard a doctor say that.

But to answer the question, yes, my CSF was similar with higher protein and the O bands were present, I guess, but not showing the typical MS pattern. Either way, I got nowhere seeking a dr that would look further into the "peripheral inflammatory response" pattern shown and sit here diagnosed with MS often wondering if the ER Neuro really screwed me over and hope to God this DMT is the right course of action and not allowing more damage. No MRIs until later in the year, so only time will tell.

Thanks for listening, I know the story didn't help you much.

[Lilith08 in reply to CV97]

“A touch of MS” —that’s a new one! Maybe it’s like being “a little pregnant.” 😅 I hope your DMT is working, too.