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Comment by jaypeg25 | Hacker News Reader

My girlfriend was recently possibly diagnosed with MS. I say possibly because the doctor isn't confident - he put it at about 75% likely it's MS - but has no other answers to her symptoms which include numbness that started in her feet and eventually went up to her thighs that lasted for ~2 weeks, as well Barber's Chair Syndrome, and Retinal Vasculitis.

All 3 symptoms have since faded away, and the MRI's weren't conclusive enough to say it was MS, so the doctor is at a loss and working to get her set up with more tests.

What's interesting is she found a tick on her about a year ago, but the Lyme results came back negative. It may be MS but the doctor seems to have enough doubt that I've often wondered if it might be Lyme or something else.

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There is currently no reliable Lyme test. The most commonly used test has an accuracy and sensitivity of 50 %. Worthless. A tick bite + weird symptoms = very high change it's caused by a tickborne disease.

https://globallymealliance.org/about-lyme/diagnosis/testing/

The CDC says, "When performed and interpreted in accordance with current guidelines, 2-tiered serologic analysis has a sensitivity of ≈70%–100% and a specificity >95% for disseminated Lyme disease." [https://wwwnc.cdc.gov/eid/syn/en/article/22/7/15-1694.htm]

FWIW it's not technically MS until there's been more than one incident, thus "multiple" in the name. The resultant lesions are usually visible on an MRI. Most people who have one incident to not go on to have multiple.

There's no definitive test other than this: multiple incidents of otherwise-unexplained neural compromise, verified by MRI as lesions on the myelin sheath. MS symptoms are readily addresses by steroids, unlike other similar conditions, so that can also be somewhat diagnostic.

So regardless of how good or skilled your doctor is, some uncertainty is inherent in the disease. That makes distinguishing it from other conditions difficult. If any symptoms recur consider seeing a specialist neurologist.

Source: more experience with it than I'd like.

Thanks for the info. These incidents have all been since the tick bite, but none have overlapped (other than the Barbers Chair syndrome and numbness in her legs...one of which kind of set on toward the end of the other). The MRI's saw some lesions, but they didn't seem to be enough for the doctor to be confident. He did consult with another Neurologist in his office who looked at the MRIs and was 100% confident in the diagnosis, but he wasn't willing to go that far.

Living in DC I guess we're fortunate to be so close to NIH because he is having her visit some MS specialist at NIH which will also include access to better/more reliable MRI equipment. It's been an ongoing process to even get enrolled in the study, but we finally have an appointment for next month so we'll see what happens.

She should get re-tested for Lyme and tested at one of the "best" labs (there are disagreements about which labs are most accurate).

The Lyme test only measure antibodies, not bacteria. That means if you get tested too early in the disease process, you might come up negative.

14% of chronic Lyme patients report being initially misdiagnosed with MS and roughly 2% are misdiagnosed with other neurologic diseases, like ALS, Parkinson’s and Multiple systems atrophy.

I think it's worth it to check it out.

https://www.lymedisease.org/lymepolicywonk-lyme-neurologic-m...

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