Miss diagnosed

[JT54]

Hi,
Has anyone ever been diagnosed with MS and then been told in a follow-up appointment that they can't confirm the diagnosis because the MRI is not consistent with MS lesions?

[twopack]

There are several members here who have had their MS diagnosis reversed, some by the original diagnosing doc and others after consulting a new doc when retirement or physical relocation required the change.  They have been given a variety of "reasons", many of them sound as vague as the one given you (I assume it was you).  This seems so ironic to me as doctors are usually so hesitant to "label" anyone with the diagnosis initially.  Once it's done why change or remove it unless there is an overwhelming reason?

It seems any disease that has no specific test to absolutely confirm or erase all doubt of its existence will rarely rest comfortably on a physician's diagnostic menu.  In fact, most of us here seem to question our own MS diagnosis from time to time.  Of course, the reasons for that are somewhat different.

Personally, I was told I had MS based on the radiologist's interpretation of my brain MRI, an abnormal visual evoked response, symptom history and physical exam.  The doc gave me reading material and told me to come back in two weeks to discuss treatment options.  She didn't speak with an abundance of confidence.  When I mentioned I was having increased parasthesias in my neck and back, she hurried to order a cervical MRI.

Two weeks and a load of emotional trauma later, I sat in the office expecting to discuss treatment but was told the new MRI was clear but the doc now wasn't.  She denied our previous conversation and offered a second opinion instead of treatment.  I jumped at the chance to find a confident doc I could feel more comfortable seeing.  

I had to wait 3 1/2 months for an appointment but it was well worth it.  My MRI lesions aren't "classic" either but the MS specialist I chose (who looked at the images instead of reading the report) was able to confirm the diagnosis and we planned my treatment at that first visit.  I've had a few uncertain moments with this doc too (all human interactions are like that) but it turns out finding him was a rainbow made possible by the storm that preceded.

I hope better outcomes are in your future.  Whenever you're comfortable, I hope you will share more of your story.

Mary

[HVAC]

Welcome I hear your frustration. I was told *You have MS", "You don't have MS", "It can't be anything but MS", "You will be diagnosed with MS at some point", then I was diagnosed with MS had order for Copaxone and then Diagnosis was changed to Lupus for one week, then finally diagnosed with MS. All this in two years. MS is a tricky diagnosis it is a diagnosis of exclusion of all other possibilities. I thought all these Doctors were nuts. Unfortunately there is no test to prove MS. Tests just help the Neurologist decide. I am sorry it is so complicated. I am not sure how long you have been at this but sometimes it takes awhile to get an answer. You might want to look click on the Health Pages at the upper right there are lots of useful information.

Alex