Part III: The Rabbit Hole

Hi Jake.  This is just an unbelieveable story.  You've got to wonder how doctors get by in the word - with all the misdiagnosis out there.  I have not had to face this kind of mistake, but I just can only imagine how angry and scared you must have felt - maybe still do to an extent.

Anyway thanks so much for sharing with us.  Members out there who would like to join in a discussion with Jake or Mandy, post your replies/comment  and we can get a dialogue going.  Maybe you have faced this same kind of tragic mistake - and can help others to not take no for an answer.

All the best, sue (moderator)

Jake,

I am so sorry to read about the horrible experience you all went through in being diagnosed. What surprised me the most was the date. 2003? It amazes me that there was still what sounds like gross misunderstanding of the disease with the neurologists that recently. I have unfortunately heard of bad diagnosises but 30 years ago, not 5. And because of his misdiagnosis for 10 years, he did things that he wouldn't have done had he known he had MS. And he is convinced that because of those 10 years, he got worse.

I know the MS Society here in DC has done a lot and continues to do a lot to educate the doctors and nurses so this doesn't happen in the future. I myself had a fairly easy diagnosis. First attack - April 10, 1997, diagnosis - June 25, 1997. I went through some scariness in finding out that could have been handled better (like don't have the MRI tech ask how long you've had MS on your first MRI before she puts you in that tiny tube) But overall, very quick complements of the knowledge of the doctors - especially my primary care. And my Spinal Tap was in the doctors office too. I do think my husband was in the office though although it was so long ago, I forget.  

I think just talking about the disease helps to educate. Like this site. Obviously a very non-medical person like me can't tell doctors, but I can explain it to others I know. In in some way, help clear up the confusion.

Thanks for the post.

Kristin