Hi Casey,

First of all, welcome to the board!  I'm sure you will find great support here as you go through the MM process.

I was misdiagnosed with early stage MS 2 years before I was diagnosed with Moyamoya.  For some gut reason I was never satisfied with that original diagnosis and pushed for further evaluations and tests by different doctors.  Glad I did!  This is not to say that one could possibly have both diseases but I will sure hope and pray that your wife finds that the MS diagnosis was wrong as it's easier (long-term anyway) to treat the MM.  I personally think her doctors are on the right track with placing the surgeries on the front burner at this time and reevaluating the MS afterwards.  I'm equally happy to hear that the new neurologist was on his/her toes and "suspected" MM!  So many don't even give this disease a second thought!  Bravo Dr. Fujji!

Hang in there as it sounds like you all are on the right path.

Regards, Lisa

Hi Friz,  Welcome to our MM family!

I just thought I'd mention that my niece was misdiagnosed with MS as well, and I talked to many on here who were at first diagnosed with MS, then MM, and only to find in most all the cases it was a misdioagnosis, and not MS at all.

Please don't hesitate to let us know if we can be of any help. Both you and your wife are in my thoughts and prayers.

Mar

Hi Casey,

Welcome to the group.  My daughter is only 20 months old, so she wasn't misdiagnosed with MS; however her doctors did suspect she had a mitochondrial or neurodegenerative disorder.

When we were out at Stanford having her surgeries, Dr. Steinberg told us that he sees patients all the time who were misdiagnosed as having MS, or similar diseases, when they really had Moyamoya.

I hope everything works out well for your wife.  I know that for us, learning that Daphne had moyamoya, and that the disease was treatable, was really a releif.

Jenny (mom to Daphne   www.daphnestory.com)

Thank you all for the support! You are a wonderful group!

My wife Jamie (aka "Mikey"  ;) just finished here second day of blood flow testing (Friday) and we are waiting for the first surgery date to be performed by Dr. James Rose in Houston.  Dr. Rose has been mentioned a couple times in the forums here and we feel very fortunate to have him on our team (he really does humm a tune!).

MS or not, I plan to document this process and later publish on the web as many of you have.  It's wonderful to know that we're not alone.  And just maybe one more story out there might get a neurologist to scratch their head and take a second look?  MM might not be as rare as statistics indicate?

Thanks Again,
Casey

Wow, an interesting thread to be sure!   

While MM is something that I am still VERY green about as far as learning, MS is something that I have come to understand and have studied since my diagnoses in 1986. 

(DJ, I promise, I won't turn this into an MS message board link!)  HAHA   

MS is a disease of the central nervous system.  Multiple Sclerosis attacks the myelin sheath that is a coating of protection around your nerve endings, much like the insulation around an electrical chord.  When MS eats away at the myelin to the point that it reaches the nerve itself, it leaves an "imprint" on the nerve known as a lesion.  A lesion shows up on an MRI as a white shadow, or white dot.

For a CORRECT, confirmed diagnosis of Multiple Sclerosis, an MRI *MUST* show a minimum of three lesions, be it an MRI of the brain, spine, or pelvis.  An MRI showing one or two lesions should be correctly diagnosed as a demylinating disease or disorder, but not the label of MS. 

Please understand, that I am no doctor.  I have researched this disease for more years than I care to remember.  Hehe 

Why some neurologists like to raise to a Dx before they know for sure, I don't think any of us will ever know.  I can't possibly imagine, after seeing (many many) MRIs of MS and MRIs of MM, that a doctor could have a Dx that far off.  Perhaps it might be that the radiologists didn't reccognize what MM looks like?

I am sorry to hear that there are a group of you here that went through this misdiagnosis.  There seems to be more than enough information and research on MS to this date, that sincerely, there is no need to have it missed or worse, misdiagnosed.   

The only other thing that I might suggest is make sure that your neurologists are personally looking at your MRIs, instead on simply relying on the reports of the radiologists.  Nothing personal against radiologists, honest, but we are talking about two life-altering diseases.

Neurologists have also used other tests, such as spinal taps, certain T1 cell research, etc. to diagnose MS, but as good as those tests are, they can show problems that MS can bring on, but can not eliminate other probems as being the cause(s) as well.
(OK DJ, I'm done - maybe.)   

I hope that this information is of some help to you.

-= Dewski =-

Hello, My name is Joani. I am being "watched" for having ms for the past year now. I have had several MRI's which have had no changes consisting w/ ms.  I do however still have some symptoms... numbness in hands, part of my legs stuff like that & yes horrible headachs- just 2 or 3 in the past year. THis was all brought on by a case of "bells palsey" a year ago. with the Bells palsey I had numbness in my right side of body.  I am now having different blood tests done to check other things out "cerebrovascular" diseases??? Is there any tests to tell my neurologist to run that may shed some light on this???  He is really a "laid back" kind of doctor but really the only doctor with in hours of where we live???
My son "Vinny" who is 3 also has neurological disorder. We do not know what caused his??? He had a stressful delivery & was sick after birth (RSV). He is doing great now but he is delayed in milestones, they tried to tell me that he had ""leukodystrophy" which he does not.  His neurologists up state here in Delaware would look into anything I suggest if I have more info on it...  ANy info would be helpful. Thank you so much for your time!
Joani  (Tnjn2@msn.com)

I was misdiagnosed with MS (after MRI) in May 05.  Then diagnosed with cerebrial vasculitis (after MRA), then finally moyamoya after a cerebrial angiogram.  Was told: no known cure, no treatment.  Thank God for DJ and the world wide web! lsuvia

Joani wrote on Aug 3^rd, 2005 at 12:10pm:

Hi Joani,
I am sorry that you are having problems with your Dx, as well as your sons.     Sometimes, it's the not knowing that can drive us CrAzY!   
Have the doctors ever made mention of "plaques" or "legions" on your MRI scans?  If they are looking for MS, have they done MRI scans on your spine and pelvis as well? 
We all wish you the best with your Dx.  Please keep us posted.

-= Dewski =-