Probable MS?

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Hello!
I'm a newbie and here's my story: After having tingling in legs and across my stomach as well as experiencing L'Hermitte's sign, I had brain, cervical and thoracic MRIs taken. No lesions on brain, but both cervical and thoracic MRIs showed multiple. Had LP done but it came back negative for o-bands. My dr. is 75% sure it is MS because of MRIs, symptoms and excluding every other disease but is not diagnosing me as definite because of LP results and lack of lesions on the brain. He is, however, going to start me on meds because he doesn't want to wait for me to get worse. Just wondering if anyone else here has had a similar situation. Also, what is required for me to be diagnosed 100% with MS? I just don't want to be in limbo for years wondering if it is or isn't, although it sounds like it probably is. Any insight is appreciated!

Thanks!

[MSer102]

Also, what is required for me to be diagnosed 100% with MS?

There's really no such thing as "percentages of diagnosis" for MS. A person either meets the diagnostic criteria or they don't.

The "XX%" sure applies only to an individual doctor's familiarity with the diagnostic criteria and their own estimate of how confident they are in judging how closely a person meets the criteria, or what they believe to be the criteria. I wish doctors would stop giving out percentages because they confuse patients into thinking there's some kind of "degree" or "percentage" of diagnosis. There isn't.

As I said, a person meets the criteria or they don't. Not every doctor might agree about whether some part of a person's history meets the definition of one of the criteria, so there might not be complete agreement about whether a person meets the criteria for diagnosis. But there aren't any "percentages".

Here's another example. An LP isn't required for diagnosis and isn't one of the diagnostic criteria. Some people get diagnosed based on other factors and never even have an LP. And about 10% of people with MS don't have O bands. So not having O bands is not necessarily a reason the "dial back" the degree of certainty a doctor has about making a diagnosis.

One doctor might look at your history and, knowing that an LP might not be needed, diagnose you based on other factors with 100% certainty. Your doctor, perhaps not being confident enough to diagnose you unless your LP is positive, felt only 75% certain of a diagnosis. But that's the doctor's certainty, not any official "percentage" of diagnosis. Some doctors might not be 100% confident of their own ability to make a diagnosis unless absolutely every test they can think of to run comes back positive. That isn't part of the diagnostic criteria. And because it isn't an official part of the diagnostic criteria, and a doctor's own level of confidence isn't part of the criteria, it doesn't really mean anything.

The diagnostic criteria don't actually even require lesions on an MRI, although doctors in "developed" countries with easy access to MRI's are hesitant to diagnose without sone kind of MRI evidence that's consistent with MS. But a few people (maybe 5%) are diagnosed with clean MRI's, based on their history and other tests being positive. So your doctor's "dialing back" of his confidence level in how close he thinks you are to demonstrating the evidence he needs to see is his choice, not anything official.

So "officially" speaking, your doctor has either diagnosed you or he hasn't. "Probable MS" isn't an official diagnosis. It used to be, but was eliminated years ago. Now, the only "official" diagnoses are clinically isolated syndrome (CIS), possible MS, or MS. So unless your doctor is ready to say that you are beyond "possible MS" he is correct in not diagnosing you. His "75% sure" is just his own unofficial estimate and doesn't have any medical meaning. A different doctor with a different understanding of the criteria and greater confidence in his or her own ability to make a diagnosis might have already diagnosed you if you meet the criteria.

But if your doctor tends to be more restrained in making a diagnosis, it might be a good thing that he wants to get you started on one of the disease modifying drugs. However, your insurance company might insist on a diagnosis before they approve your medicine. It's one of the principles of medicine that a doctor doesn't treat a patient for a disease they don't have. And until he makes an "official" diagnosis of MS, you "officially" don't have MS, and your insurance company might hesitate to violate the rule by approving a medicine for a disease you don't have. So be prepared just in case there's a problem with your insurance paying for your medicine.

So putting percentages aside, it sounds like your question really is what are the criteria for a definite diagnosis of MS. Here's a link to the article that explains what the current criteria are. library.wiley.com/doi/10.1002/ana.22366/full
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It might clear up some things for you, but it might also lead to more questions. It's something to talk to your neurologist about.