Hi,

Just wondering if all or anybody also has another nerological disease on top of having moya moya? I may have both ms and mm, as rare as that may be. I got the results of my lumbar puncture and all signs point to ms. Does anyone know if mm can affect the spinal fluid in the spinal cord? I am really depress by that initial finding but yet relieved to finally, perhaps, know what I'm up against.

Doug

At this point, not sure what other neurological disorders Arianna suffered from.  I know that when she was a week old she underwent 2 lumbar punctures and was first thought to have spinal meningitis.  That was later ruled out with a second puncture.  She was diagnosed with hypocalcimia.  She never had a definate diagnosis until the MM.

   [smiley=huh.gif] [smiley=huh.gif]  Hi Doug I know several people from this site and elsewhere that went the moyamoya/ms route.  From what I've gathered the stoms are similar so MoyaMoya, which remains unknown to many doctors (yes I said Doctors) is often mis-diagnosed as MS.  All I could say is to make sure you're being checked by a Moyamoya savy doctor.  
    Take care good-luck and dont forget to pray to our patron saint Philomena  
    Tom Gallucci :)

All I have is MM. Although, I do know many were misdiagnosed for MS. If you do actuallly have both, I think it is rare.

Keep your chin up!! As soon as they get everything figured out, you will know what your up against, and sometimes that is relief in itself.

:) Sara

Hi Guys (and Girls),

Actually, I was hoping that I, too, was misdiagnosed with MS so I fought to get a lumbar puncture. The results show "MS" or "MS-like disease". I am just wondering if a positve result from the lumbar puncture means definitely I have MS. I know that a negative result DOESN'T mean I don't have MS.

All my hope was rested on that test. Now, all hope is gone. Not only do I have mm but also ms. One gets you now and the other gets you later.

I appreciate everybody that has responded. My family and fiance will have a new battle on their hands.

Doug



I

Hi Doug,

I was just reading your last post and it made me wonder.  Is there any possible way that the MM, or more precisely any damage the MM has done, is showing up on the lumbar puncture resulting in the "MS-like" results?  I wonder if more MM people having a lumbar puncture might show similar results?  Who knows what kind of damage or how the MM shows up on various tests that most of us just haven't had.  Mind you, I have NO idea what I'm talking about in this area  ::) but curious if this is a possibility.

Lisa

My son was born with a basal encephalocele and has septo-optic dysplasia. We have know about those DXs since he was 6 wks old. We just found out about MM dx in March of this year. Austin is 6 years old now. (Encephaloceles are an extremely rare neural tube defects.)

Danette