Do I have multiple sclerosis?

Here is My Question:
Hello! I'm a 26 year old female who's been living with multiple neurological symptoms for over 10 months now.

I've had multiple brain MRIs (done on 12/23, 3/24 and 7/24) along with MRIs of my entire spine (lumbar done on 3/24, cervical done on 3/24 and thoracic done on 7/24). All MRIs were performed with and without contrast. All of my imaging has come back normal. I've also been tested for Lyme, syphilis, HIV, bartonella, and SSA 52&60(RO)(ENA)AB IGG. All the results for these labs came back negative as well.

I had a lumbar puncture done in March of 2024 which came back positive for 11 oligoclonal bands in my csf, but none found in my serum.

To date, I've been collecting neurological symptoms like Pokémon. Mainly, I deal with left sided facial numbness (onset: 11/3/23), numbness/tingling in my extremities (onset: January 2024), muscle spasms/twitching (onset: February 2024), weakness and stiffness of my left calf (onset: mid February 2024), heavy feelings/pain in my legs/back when walking for too long (onset: March 2024), and watery bowel issues (onset: March 2024).

These symptoms usually come and go several times throughout the day. They all started out as hardly noticeable, but have become more prominent with time. I think some symptoms have improved slightly with time (facial numbness, bowel issues). Other symptoms have gotten progressively worse (twitching, endurance while standing and moving around). Some symptoms have evolved a bit (calf weakness/stiffness is still present, but now it feels like my left knee is more affected). I take 20mg of amitriptyline for the numbness/tingling each night, and it caused this symptom to disappear for two months. It's been creeping back in during the afternoon and evenings though, so I suppose this symptom is getting worse as well. There are other symptoms, but to be honest, I can't keep track of them all anymore.

I know that MS could be the most likely culprit for what's happening to me. I also know that I don't meet the McDonald criteria for an official diagnosis. Despite my clear imaging, I'm still scared of having PPMS. I've yet to have a true attack or relapse that I know of. The lack of visible lesions worries me as well, since I know that PPMS patients tend to have a lower presence of inflammation in their MRIs compared to RRMS patients.

I've read stories of people suffering with chronic symptoms for years before finding lesions on their brain and spine and getting a PPMS diagnosis. I'm afraid this exact scenario could happen to me.

Does my story sound like MS to you? I know I don't present like a textbook case, but I'm not sure what else could explain everything that's been happening. In addition, would anyone be able to clarify whether my case could be RRMS after all? I've yet to find anyone with a similar presentation/diagnostic story outside of PPMS patients. I'm scared of the possibility of having progressive MS so young. I know it's exceedingly rare, but my story already feels rare compared to many MS cases in my age range. Having RRMS feels like a long shot, but I'm scared of things progressing further.

My current neuros have differing opinions. My first neuro said I most likely have MS based entirely on the results of my spinal tap. He even wrote me a prescription for Kesimpta. My second neuro doesn't think I have MS, and wants to test for every possible suspect. Being in limboland for so long has been mentally excruciating, and I just want to know what's happening to me, and if it will ever be able to stabilize or get better.

Answer:
​The presence of a large number of oligoclonal bands (greater than 4) in the spinal fluid that are not present in a matching serum sample is an abnormal finding that usually requires explanation (see below). However, it is not diagnostic of multiple sclerosis without further confirmation.
The first thing you must do is confirm that the oligoclonal bands that were reported in your CSF were distinct from those present in a matching serum sample. It is not uncommon for patients to be referred to us because of a spinal fluid report stating, "oligoclonal bands present in the CSF", only for us to discover that the small print states, "matching bands observed in the serum". Sometimes, the small print is excluded from the report sent to us and we must contact the lab for confirmation.
Assuming the analysis did find 11 oligoclonal bands in your CSF that were not present in a matching serum sample, there are several possibilities:

1. The OCBs are a product of an infectious (viral infections, Borrelia, and syphilis most common causes) or non-MS related inflammatory process (sarcoidosis is most common) that is still active; this is more likely if other abnormalities were observed in the CSF
2. This could represent prodromal findings of multiple sclerosis or MS primarily confined to cortical gray matter. Standard clinical MRIs are not able to image MS involvement of the cortical gray matter, a common area involved by MS even early in the course of the disease.
3. The oligoclonal bands are a residual effect of a prior infection, perhaps mononucleosis, that resolved. This may indicate you are at risk of MS

I would recommend the following:

1. Check on the accuracy of the prior oligoclonal band report as mentioned above
2. Assuming the report was accurate, if the prior spinal fluid analysis was done over a year ago, you may want to repeat the lumbar puncture. Oligoclonal bands that disappear are unlikely to be caused by a chronic condition such as MS or other chronic infectious or inflammatory conditions
3. If the CSF continues to show oligoclonal bands in high numbers (greater than 4 bands that are not present in the matching serum sample), you may need a high field MRI, preferably at 7 Tesla but a 3 Tesla scan with double inversion recovery sequences may help, to see if there is evidence of cortical  gray matter involvement. This type of MRI scan is not done routinely and may require a referral outside of your region.

You should take this information to your current neurologists to discuss further .
Good luck

Revere P (Rip) Kinkel, MDProfessor Emeritus
Neuroscience Department
University of California San Diego