Misdiagnosed with MS?
It's been three years since the study published by UCLA and Cedars-Sinai researchers determined 20% of MS patients have been misdiagnosed. I have the diagnosis; I do not believe it is accurate. I have been to six neurologists in the LA metro area, none of them have reassessed me or looked closely at my case, this includes time with clinicians at UCLA's MS Center, UC Irvine and elsewhere.
My question: Does anyone know of any clinical effort underway to identify patients who do not in fact have this disease? This post is an invitation to share your experience with questions you may have about misdiagnosis and efforts you have undertaken to address the issue.
Hi,
! This is a topic that comes up in this community from time to time and it's worth discussing. If you don't mind me asking, what diagnosis do you think might be more accurate for the symptoms you are experiencing? I think as MS and other neurological conditions are researched and studied, we learn more about those conditions. And our understanding of them and how best to treat them changes as well. Here's an article from one of our contributors about the topic of MS and misdiagnosis that I thought you might find interesting -- https://multiplesclerosis.net/living-with-ms/misdiagnosis.
I would definitely be interested to read what other community members have experienced when it comes to an MS diagnosis (or possible misdiagnosis).
Thanks for starting this conversation,!
Best, Erin, MultipleSclerosis.net Team Member.Hi Erin, thanks for your reply. I think MS is a big receptacle clinicians dump weird neurological events into with some percentage of those being actual multiple sclerosis. I have -some- symptoms of MS. My
, I think you're right. It reminds me of being pregnant -- pretty much any issue you experience is chalked up to being a pregnancy symptom. I swear, you could be growing a third arm and a doctor would be like, "Yeah. Sometimes that happens when you're pregnant."
I exaggerate, but you get my point.
Best, Erin, MultipleSclerosis.net Team Member.
Thank you for your invitation. I had a totally disastrous 2025 since I in March learned about side effects of my anti-epileptic drugs - they were a 100% match to the cognitive symptoms that put me on disability pension "due to MS-progression" in 2008. Now after revision of ALL my records since the diagnosis in 1995, it is turning out I never had MS, but they were scars from my extreme premature birth and fatigue/memory/speech issues stemming from a constant slowwave focus in my left frontal lobe, a focal subclinical epilepsy with ultra rare seizures.
I stayed very fit (athletic) and worked part time in also cognitively demanding work, but fatigue and short term memory issues hindered me from full time and as they were unpredictable, I was unemployable. The MS-diagnosis cast a shadow that left all other symptoms untreated or studied and diagnostic momentum made the neurologists stick with the colleague before.
Here I am with 30 years under Damokles´ sword, a working career that disappeared in a day and a health scrabled by the full thyroid issues caused by the MS-meds.
I can barely cope with this.My goodness! What you’ve described is devastating. What you went through is incredibly unfair, and it makes sense that you’re struggling right now. You've dealt with real loss of time, trust, and opportunity and I'm so sorry you've have to deal it all. What I do want you to know is that you did the best you could with the information you had. I truly hope you’re finally getting answers, support, and care that actually fit what you’ve been dealing with. -Latoya (Team Member)
