Question about MS diagnosis without lesions

[HalliB]

Hi. I have been having weakness, numbness, fatigue on and off for 4 years. I have done many tests for all of the likely disorders/diseases/syndromes and they all have come back negative. I have also had two MRI's (2015 and 2016) - both negative for lesions. In December 2016, I was found to have optic nerve damage. I also have small fiber neuropathy but from what I've been told, the weakness (which is my biggest issue) is not a symptom of that.

I have heard that some people go several years before an MS diagnosis. My question is: do you have to have lesions for a diagnosis?

I am anxious to find an answer for my symptoms.
Thanks!
Halli

[aspen2]

I have heard of the occasional situation where someone has been diagnosed without lesions, but it seems less and less common, mainly because meeting McDonald Criteria (2010) for ms is a major criteria.  I had lesions and it was still a very slow diagnosis because there are other conditions that also cause lesions, and the lesions I had were considered too small.

Since multiples sclerosis means "multiple scars", it makes sense that there would be lesions found.  Your other issue is the presence of the "red flag" of small fibre neuropathy, which as you said, is not an ms thing.  The presence of red flags makes a diagnosis more difficult.

It is very difficult to wait for a diagnosis, and I'm sorry you're going through this.  However, neurologists must carry out due diligence. The ms DMTs have side effects, and in addition a wrong diagnosis may mean you are not treated appropriately for something else.

Hoping you can find some answers soon!