MS diagnosis

[KD007ham]

I have recently been diagnosed with MS. I have lesions present on my spine and brain.  My first paralisis attack was in 2008.  Since then I have had more activity so there are more lesions present this year on both the spine and brain.  However, in 2008 I only had 2 bands present in my spinal fluid so there was only a CIS diagnosis now in  2011 I have 3 band present in spinal fluid, but I still do not have the four bands they are looking for to make a proper diagnosis what are the chances that this could be a mis-diagnosis?

[Sumanadevii]

I have lesions only on my spine.  My MS specialist had me take a spinal.  Her very words were it didn't matter if I did or didn't have Obands, I have MS.  Period.

[anon07072023]

From what my neuro has told me, lesions on your brain could mean something else besides MS.  However, if you have lesions on your spine, more than likely they could ONLY be from MS or transverse myelitis. And if you have lesions on your brain, then it's not transverse myelitis. I'd have to say that, unfortunately, the MS diagnosis is correct.

If you are not currently taking disease modifying drugs (ie Copaxone, etc), I hope you start them soon.

-Kelly

[jujuminx]

I have an MS dx with no LP done, only lesions on the spine, not the brain.  LP not the definitive test.

I would say based what you have written about what they have found so far, your progression, and the McDonald criteria, they should have dx you before this.

This kind of post makes me mad and sad that there are still medical people out there that wait too darn long to make the MS dx and deprive people of dmd's to help slow progression.

If you are uncomfortable with the dx (and who isn't?), get a second but don't sit on it. It's important to start dmd's to help slow the progression.

Welcome the forum, this is a great place for support and advice.

Julie

[sllowe]

Hi KD,

Welcome to the forum. Did the doctor recommend a disease modifying drug to treat your CIS? If not, they should have. That is the recommendation, and many top neurology depts in the states recommend this treatment because early is best.

The additional lesions this year should be considered a 2nd attack w/in your CNS, and a definite dx should be given, unless the doctors believe something else is the cause of your lesions.

There is always a chance of mis-dx in any dx. But, I'm wondering if you received a 2nd opinion at anypoint in your dx of CIS?

If the unique banding is in your spinal fluid and not your blood serum, it should be considered a positive and that shows the banding is of CNS origin.

So sorry you are left questioning - this is something you should not have to worry about at this time. Most important is to treat the CIS, and the now possible definite MS. Both should be treated w/the available DMDs.

Please ask anything - and again, sorry for the uncertainty you are left with.
Thanks for joining us, and trusting us to help in some manner.
-shell

[grannyhotwheels]

I had a bad experience with the Mayo Clinic myself... I had everything but the O-Bands... The MS Specialist there told me there was no way I had MS... 10 minutes before he came in to talk with me his assistant told me that after ruling everything else out there was no doubt I had MS...

The assistants jaw dropped lower than mine did when the specialist told us this... Since leaving the Mayo Clinc I've been to 3 more MS Specialist all telling me MS... Besides my PCP I've had 4  doctors tell me it was MS so I decided that was enough... Maybe the late great Mayo Clinic can occasionally be wrong...lol


I'll be praying,
Carol

[COBOB]

Also keep in mind that about 10% of patients may express NO unique Oligoclonal bands in their CSF yet still have Clinically Definite MS.  There is nothing in the McDonald Criteria that requires Oligoclonal bands in CSF.  

Bob

[Sarahsmom46]

Welcome to the MS Forum here on MedHelp.  Thanks for posting your question, which I will assure you will get lots of responses.

Where to start.  Well, first of all, it sounds like your testing was done by the Mayo Clinic.  Mayo is about the only medical lab that requires 4 or more bands whiile the rest of the reasonable world working in the field of MS agree to 2 or more bands as an acceptable number for supporting a diagnosis of MS.  Of course there are many reasons that we may show O-bands in our CSF, but the fact that you have the original 2 and now one additional band points strongly to MS.  

What other testing have you had done so far?  Did a neurologist order the test or some other doctor?  I hope you take the opportunity to read our Health Pages.  Click on the icon titled "Health Pages" at the top right and you will find excellent articles on the O-band issue.

I'm going to leave room for others to chime in now.  Hope you find our feedback helpful and please feel free to ask more questions.  Again, welcome.

Julie