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How were you diagnosed?

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Multiple Sclerosis
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Posted 8/29/2008 3:27 PM (GMT 0)
Hi,

I am wondering how everyone was diagnosed. And how long did it take?  I have heard that MRI's are not that reliable. is that true? What about spinal tap? Is that reliable? What other types of tests are available that I may not know about from my Dr?

Sorry for so many questions blush   I am thinking of asking for more testing. My MRI was normal and other than that, don't know which tests to talk with my Dr. about.

Posted 8/29/2008 11:27 PM (GMT 0)
I had three tests to say definete MS. First was the MRI,which showed many lesions. Next I had the evoke potential testing and third was spinal tap. I'm not sure if there are more tests then that. Thats just what I did.
Posted 8/30/2008 3:16 AM (GMT 0)
Nichole has listed the big three.  A neuro will also need to take a complete history of symptoms along with a thorough neuro exam.  You will need some blood work to rule out other infections.  The blood work is usually done in conjunction with the lumbar puncture.  There is no one test nor is there one set of tests that will indicate MS.  It is the combined tests results with an exam by a neurologist that will get you a diagnosis. 

Posted 8/30/2008 4:13 AM (GMT 0)
It's wonderful when the big 3 tests confirm right off the bat and say yes, to a firm dx but from what I understand there''s a lot of us out here with the nebulous, multiple symptoms chronic issues and when the neuro does the full exam, he's sure it's MS... but no lesions, oBands or EP issues...

 I'm one of those. No lesions (to be found-... std MRI hasn't found the lesions yet, EP's are normal, LP showed no Obands) but over the 18 months of visits and labs, He'd documented enough to determine the dx for his own sake. We more or less tried to prove it was anything else for those 18  mos but it kept coming back to MS.

MS is a fickled wicked disease with a sick sense of humor...

Posted 8/30/2008 4:26 AM (GMT 0)
My first MRI showed a couple of lesions (one in the brain stem that corresponded wickedly (yes D) well with my symptoms) but my LP was negative. So that wasn't enough to get the DX. But I kept getting worse, whole new batch of symptoms within a month and I actually had a 2nd MRI (6 weeks apart only) which showed old lesions a bit smaller and new ones cropping up. So that was my DX. The other tests like evoked potentials were not impressive. I also made them do loads of blood work to rule out other things. So that includes the big three. Willow
Posted 8/30/2008 4:45 AM (GMT 0)
Oh man!  Willowmom, those brain stem lesions are supposed to be awful!!!  I have heard that a lot of people have no o-bands early on.  I would love to know if you have o-bands now.  Could you go get another lumbar puncture and satisfy my curiosity? 

Posted 8/30/2008 4:53 PM (GMT 0)
Thanks Gretchen, you nearly made me spit out my coffee...good chuckle...yes I'll get right on the phone with the neuro to ask for another LP. The brain stem was really doing a number on me and when I read about it, that spurred my decision to get on Betaseron immediately. It subsided. I was lucky. My speech is normal now unless I really overheat or have a little flare. My balance is also good except the occasional listing, vs. constant vertigo to start. I slept about 18 hours a day when it was bad. I have not had another MRI in the last 5 years and partly I don't want to see that lesion on the brain stem if it's still there. Prefer to pretend it's not ;)
Posted 8/30/2008 6:09 PM (GMT 0)

Thank you everyone. I have no definitive diagnosis yet but I only want to remark that you all are the bravest people out there.

When I read through the forum posts I am constantly inspired by your strength and positive energy.

Cheers and well wishes to all...

KM

Posted 8/30/2008 8:25 PM (GMT 0)

Willowmom,

I so know how you feel!!!  I begged for NO MRI this summer.  I know it usually shows some sort of progression and I have been feeling so good.  I just don't want to know.  I want to go on my clinical symptoms.  And right now I am holding steady.  So let me have a nice slice of denial pie. 

At that MS seminar I learned about something called co-lateral neuro pathway development.  That is when the brain compensates for damage (any damage; injury, disease, lesions) by creating new pathways to do the same old things.  That is one of the reasons that some can be very impaired than slowly over time get better.  I learned that those pathways happen in most parts of the brain but it almost never happens in the brainstem or the cerebellum.  Hence the reason that I have the vertigo that never leaves.  My biggest lesion is on my cerebellum. 

I am glad to hear that you almost spewed your coffee over my suggestion to get another lumbar puncture!!  If your not really going to go do that for me, then at least you had a good laugh.

Posted 9/1/2008 4:06 AM (GMT 0)
Thanks KM for the positive comment. Sometimes I feel very brave, sometimes not. Like Gretchen says, a slice of denial pie now and then might help ;)
Thanks Gretchen for the info from the seminar. I do think perhaps I got lucky and the glitch in the brainstem found a way to route around. I think this because i say I 'usually' talk fine now. But on two occasions when I have been startled very quickly (i.e. quail flying directly into grill of car) I have tried to speak and had the old slurry nonsense come out. I took that to mean in an emergency split-second situation my brain tries to route speech through the path it used for 33 years. Heaven hope I never have to shout "Fire"! But that route is no good. I think there's a side road that I use now for speech. Sometimes I may take a second to find it, but no one notices the second. It's fascinating stuff. The brain is a miracle really. So yes, let's skip the MRI (Massive Reality Insult) for now and go on how we feel. I'm with you! Willow
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