I'm back from my follow-up appointment...and...

[Twinsmom06]

Well the whole point of getting this MRI was to do a comparison of the first. Well....THEY LOST MY MRI and nobody even attempted to call or get another copy! So...No comparison was done! P'd off to the max!

Neuro is still leaning toward MS and I will have one last blood drawl to double check the rule out stuff again. He gave me info on injections to read up on and decide what I want to do.

Some "interesting" new findings on this MRI that were not on my other on 4 months ago...

Impression:
There are numerous lesions seen in the deep what matter bilaterally, some of which are prominent in size. These findings are consistent with a demyelinating disorder. There is no evidence of associated enhancement.

There is a linear enhancing structure seen on the left side adjacent to the brain stem. The etiology is uncertain and this may be a small mass or possibly focal prominence of the vasculature. Further evaluation with MRI of the internal auditory canals utilizing thin slices with and without contract is recommended for further evaluation.

The paranasal sinuses are essentially clear, except for a focal structure seen along the posterior aspect of the left frontal sinuses. This may be a small nucocele or cyst or possibly a small lipoma.

Perfect. So now I'm still in limbo because they didn't do the comparison, I have a "mass" AND I have some sort of fatty tumor or cyst...ugh.

NOT THRILLED with today's appointment!
Kim

[LisaJF]

I find it hard to believe that they "lost" your MRI?  I mean everything is electronic -- stored in a data base with patient's name/date of birth/medical record number/ etc and where ever you had it done should have it.  Ever call the place you had it at and ask for a copy of the CD of the MRI?  

Or do you mean the MRI you had done was not at the same facility so they lost the copy you had?  I'd call that place where you originally had your MRI done and request another copy and send it off to the people so they CAN compare.

Sorry you're frustrated.  I wouldn't blame you.

Lisa

[Twinsmom06]

I should also add that the numerous lesions are seen in the periventricular and juxtacortical deep white matter bilaterally, primarily in a juxtacortical distribution.

Lisa, Yeah, my first MRI was done at the hospital and the rest were done right at the neuro office. I gave them my copy of the disk and they lost that prior to the radiologist getting his hands on it. Errr. Yes, I am going to request the hospital send over the disk and have the radiologist compare...as was the master plan in the first place!

[Lulu54]

Well now, doesn't this just blow?? !!!! I would be on the phone on Monday to the imaging places and track down those electronic records that Lisa mentions.  This is another one of those good examples of why it is so important for all of us to get copies of our mris and labs and keep a copy in our records.  

If it has been a while, you records may not be around anymore.  Every place purges their files on a different schedule.

I'm so sorry today's appt got you nowhere.
hugs, :

[Twinsmom06]

Thank you all for the kind words and suggestions.

I went to the hospital where I had my 1st MRI and got another copy. I go in this friday to have my now 5th MRI on the "enhanced mass" they found in my silly little brain. When I go in I will give them a copy of the 1st MRI and tell them (demand) they do a comparison as I was told would happen.

Who knows how long that might take but I feel like I am at least doing something!

I had further bloodwork done on Monday and pending the results I will be in contact with my Neuro (he gave me his cell number!) to go ahead and get started on the DMDs. I have plenty going on upstairs and most of them are in typical and specific spots for MS. That, with the ER visit a couple months back and my bout of vertigo just prior to that...looks like we are moving forward. Although he did not say if I have a dx or not??? Maybe I need to ask that question! I'm pretty sure we are still at "probable" but still moving forward.

I guess I don't really care at this point. I KNOW there is an issue so I'm being as proactive as possible. I guess thats all I can do.

Kim