Reply To: Worry Worry

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1 month ago

@mspenny you would think but when I went to the Mayo (Rochester/US) for a second opinion on my transition to SPMS I had to start out by convincing them that I had MS in the first place as so many people show up there that have been incorrectly diagnosed! I got the MRIs of the last 15 years delivered to them and my treatment history since Dx in 2005 and they agreed I had MS and we could start the conversation…I thought it was crazy but then found out how many people aren’t diagnosed correction or quickly.

There is also something called Devic’s or NMO that basically is much like MS and when lesions popped up on my spine I was sent for a blood test to make sure I didn’t have that instead as there are also lesions on the brain but it is a different disease and treatment path.

So- while an MRI should be definitive there are actually other conditions that can cause similar lesions.

But people on the street don’t know that…and relatives and friends don’t really get that some times as well. Keep in mind that MRIs are still kinda “new” and if they aren’t really up on things there was a time not so long ago that people didn’t really understand much about MS, how it was diagnosed, the symptoms and if it was even treatable..there is a lot of education of the population that still needs to be done-