Hi Teetee...they ran the spinal on Cara when she was 2.5 and that was negative.  I don't think you can see "MM" in the spinal tab.  They didn't know she had MM at that time either.  I think the angiogram is the sure way to diagnose MM.

They did a spinal on me (I don't have MM) because they suspect MS, too as I was losing alot of nerves, falling down and almost wheelchair bounded...but they couldnt do the MRI yet as I have a magnet in my head to hold the cochlear implant...so they did all the testing including the spinal (which came out negative) but there was alot of nerve damage...right before they were going to do the magnet removal...one doctor wondered if I had a B12 defiency..I went my father has that too...they went oh my we have to give her some B12 shots for the next two weeks to see if anything happens (improvement) before doing the magnet removal....and that was the case.

Also I kept asking the doctors when the list of possible disorders for Cara kept getting smaller...if there was anything that would identify the specific disorder..MM.  Her artery network shown on the MRA was abnormal anyway but they weren't classic signs of MM.  The angiogram didn't show much puff smoke, or tiny arteries being formed either. 

Im going to check "spinal tab" to see what its purpose is...and I'll be back.

Carol

Mandy also had a spinal tap but was not diagnosed with MM until the Mra and angio where done, so my thought is no the spinal tap won't show if it is MM.
                              Nancy

teetee wrote on Aug 24^th, 2005 at 11:27pm:


Hi Teehee,

First, just let me say that I am not a doctor.  With that said, here is my  :

I have had MS since 1986.  It it my understanding that an MRI, showing three or more lesions in the brain, spine, or pelvis is the positive test for Multiple Sclerosis.  If your neurologist wants to run other tests, I would inquire as to why.  He/she may be trying to rule additional abnormalities out, but as far as MS is concerned, a spinal tap can only show the presence of demyelination.  It can not diagnose MS.

I have had a spinal tap as well, and unless there is an extremely important reason that your neurologist needs this test completed, my personal opinion is to refuse it. 

Other than a "double positive" for a demylinating problem, there is nothing that a spinal tap can determine, that your MRI hasn't all ready. 

Did you ask your neurologist for a second opinion?  I would also inquire if your neurologist personally viewed the MRI, and did not simply go on the report from radiology.

If these is anything that I can do to help, please do not hesitate to ask.

Good luck and keep us posted,

-= Dewski =-

Teetee,

My daughter had three spinal taps when they were trying to figure out what was wrong.  They can determine if you have a viral infection (meningitis), or a chemical problem, but I think that's about it.

Obviously Daphne's did not give us any idea that she had Moyamoya disease. In fact, she also had two structural MRIs that didn't show her Moyamoya.

It wasn't until she had an MR Angiogram that the Moyamoya was discovered - and hers was severe.

If you think that your symptoms sound anything like Moyamoya, I would insist on getting an Angiogram or an MR Angiogram.

Good luck.  I am sorry to hear that you aren't feeling well, and that you have this scary new finding on your MRI.      I hope you get to the bottom of this soon.

Jenny

Hi Teetee.

My thoughts on this are, that over the past few years, I’ve seen it to be quite common, (from the many MM patients I’ve spoken to), to be MISdiagnosed with MS. Why?…I can't say for sure, I’m not a doctor, but I always figured it’s because MM was so rare, so they never bother to consider MM. Both diseases are vague and unpredictable, and both diseases are different for each patient, etc. So MS is usually diagnosed first, rather than the rare disease, Moyamoya. BUT, just so you know, it's my understanding that there is no single test available to identify or rule out MS. Several tests and procedures are needed before they can safely say it’s MS. So perhaps your doctor is just trying to confirm his MS diagnosis, or rule it out with the spinal tap. It doesn’t seem like he’s listening to your concerns as to ruling out MM as a possible diagnosis.

If it were true that an MRI showing three or more lesions in the brain, were a positive test for Multiple Sclerosis, then I can also see why there would be so many who were MISdiagnosed, because again, it’s my understanding that, (as Dewski said) there should be signs of MS in different parts of the nervous system as well, not just the brain. You may have researched all this already, but just incase, here’s a link to the National MS Society, incase it will help: http://www.nationalmssociety.org/Diagnosis.asp

My advice, as always is, GET A SECOND OPINION, especially if you feel he's not listening.

Our thoughts and prayers are with you. Hugs for Breanna too.

Mar

The neurologist said the only reason they are doing a spinal is to rule out things.  Im not looking forward to the procedure!