MS Misdiagnosee: MRI Details

[LisaQ.]

Another ms mis-diagnosee checking in here.

Emma, tell me about your mri? How long did it take, and did you have contrast? Describe to me everyting the tech said to you while you were on the table.

There are some clues that can be taken from all of this, not fool proof, but after having 3 sets (no, maybe 4?) of brain mri's, I sort of know the drill by now.

I may be able to ease your mind a bit.

I was dx'ed with ms, also. There was a suspicious lesion on my cervical spine and this doctor jumped the gun and started treating me. The neuro was really furious, because it of course, wasn't ms.

Your symptoms just don't sound like ms to me. It typically presents with eye symptoms, double vision, near-or total blindness, or numbness (not so much tingling and twitching.) You wouldn't start out with tingling and end up with weakness. In an exacerbation, you are hit like a freight train, and the symptoms gradually improve, not worsen.

Also, a true exacerbation of symptoms needs to be separated by space and time, meaning there has to be a period of months or years (years is more typical) of no symptoms at all, AND the symptoms need to occur in a different anatomical region. (You had said you had issues with your same hand six years ago.) That's the only way to really nail a diagnosis, separation of space and time as well as objective clinical findings.

You said you were looking on line at ms sites. Please, please do your darndest to stop that, especially message boards. There are so many undiagnosed folks on there, in ms limbo-land who have been pronounced with various ms dx'es "possible ms," "probable ms," etc. and these are a rightfully frustrated bunch. They are in flux because their mri's are perhaps only showing one lesion, or the lesions aren't in quite the right spot to correlate to their symptoms. Then you have others (like I was,) who have negative mri's, no idea what is wrong with them and they are desperately trying to find where they fit. People like that will, of course sound very much like us, and the well-meaners will rush to support them and include them in the "club."

You don't belong to that club today, Emma. You belong here, with us. Try to relax and believe that.

Blessings and hugs...
Sue

 

[Jackie]

Suzi, I hope it is ok to ask you a question;

when did your problems start?

And what was the lesions in your spine???

What finally made the doctor say that you do not have MS, despite this lession?

Thank you so much
Joanna

 

[LisaQ.]

Hi Joanna,
My symptoms started 7 years ago when I was dx'ed with coxsackie b virus after my first ms work up. I had only brain mri's, and if I'm not mistaken I had 2 of them over two years, both negative.

Then waxing/waning strange neuro symptoms (all post viral) throughout the 7 years. I don't have time to go into detail, but suffice it to say my symptoms were pretty classic ms (except-and this is a big except-I never had anything in my eyes but nystagmus last year, plus my symptoms weren't severe enough to be ms..)

Then, last Christmas I got severe perceived weakness, tingling, etc everywhere. Another ms work up ensued. Again, I had a full set of mri's, evoked potentials, lp, cervical and thoracic because that had been neglected the first time and I was having lower extremity symptoms. (Note to Emma-please don't read into the fact that I had a cervical mri-it was only because my legs were really troubling me, so they wanted to see if I might have some degenerative disc disease moreso than ms.) This is where the teeniest of lesions was seen. After seeing the 2nd ms specialist (this one at HUP,) she decided she didn't like the quality of the films and I had to go for another whole set on very high tech equipment. This is where it was confirmed that my "ms lesion" was really just a little cyst that was in fact, an incidental finding and not causing any symptoms at all.

Everyone now pretty much agrees it is some post-viral syndrome (which triggers bfs) as I've had strongly reactive antibodies for parvo, ebv and coxsackie.

Hope this answers your questions...I gotta run, I'll check back later.

 

[emmaengland]

I am overwhelmed again by the selflessness of people here. Thank you so much for taking the time to write.

My MRI was just of my brain - it took about 25 mins, in 3/4/5 minute chunks where the noises were different. They didn't really say anything that seemed important when I was on the table.

I don't know about the contrast thing. I didn't ask, but will ask the neuro when he goes through it with me ... if he goes through it. His secretary said that it's the norm to notify people of their results in writing. I'll buy a bottle of gin before opening that letter!

Many thanks for all of your support again. It's really helping me through.

Emma