How many have been dx and later undiagnosed?

[jumpinjiminy]

This seems to more often than you would expect and it got me curious how many have been dx and later had the dx either questioned or revoked?

The NP I saw recently was quite in disagreement with the practice when I brought it up, saying she'd never heard of such a thing. Apparently, she doesn't believe this happens. Ever.

[HVAC]

I was told I had MS but the Neurologist closed his practice and sent me to another Neurologist. She said I definitely did not have MS but she sent me to a Neuro Opthalmologist. I told the N.O. I was glad I did not have MS and could stop this nonsense. She said you will be diagnosed with MS so my GP sent me to a MS Specialist. A year and a half of tests later I was diagnosed officially with MS. I went to another MS Specialist for a second opinion and he said you definitely have MS. No one has taken away the diagnosis again.

I did have my first Neurological episode in 1965 at the age of two before MRI and Doctors knowing kids could get MS so they were thrown by the lifetime of symptoms. There is no blood test for MS yet so it is still hard to diagnose and guess work. Soon they will have a biomarker.

Alex

[Wobbly]

I hear it can happen, but it can get back to the dx as well.  Sometimes your giving a Dx of Atypical MS, which I think can mean it sounds and looks like MS, but the tests don't all conclude to it, so it also can come up with another DX when other tests so other things??

good luck
wobbly

[maxthecat43]

That happened to me too.  I was diagnosed in July 2011.  Undiagnosed in December 2011.  Then got my dx back at the end of January 2012.  (Which was later confirmed by a specialist that works with my neurologist.)

I think sometimes diagnosis depends on the neuros experience with the disease.  

Tammy

[wiggles94]

Well - I guess you could say I was - on Rebif for a year

2nd opinion:
MS neuro said "NOT so sure about this"
Off Rebif - being followed by MS neuro now -  MRIs and neuro exams - So far (been off Rebif for year and a half) - NO change on MRI

BUT also no change in my sx - they never go away like they should with RRMS......

Now am Possible mild MS - started physical therapy to help with gait issues that are making me a bit clumsy - proactive