Hi all This is Tom G from NJ
    My Doctor Dr. Connoly suggusted that the best way to monitor Moyamoya would be to have a yearly CTA scan and a profusion CT scan (both tests are non invasive and are done at the same time)  The profusion scan requires a state of the art high speed cat scan machine that you will probably find only at large university hospitals.  
    Well I had my scans 2 weeks ago.  Dr. Connoly said that all looks good and theres nothing to worry about for now.  he said to reoeat it in 1 year and if that looks good do it every 2 years.  
   
    Ihave a question for anyone or all.  I'm doing OK and am back to work as a highschool special ed teacher but I am suffering from an unrelenting fatigue that wont let go.  I'm always exhausted.  It's not my meds I've already looked into that.
    Any thoughts or suggestions would be appreciated.
    Thanks   Tom G.

Hi Tom,
Just a thought. Have you looked into low iron in your blood? I think the term is enemia. I think it can be a side effect of some meds and sometimes it just happens. It would be worth a shot to look into it.  Take care-sisinlaw

Tom,
Thanks for the info.  
Re your fatigue - you might want to ask your doc to run a "specific" vitamin B12 test.  The routine blood tests catch only 75% of the deficiencies.
Best,
Roni

Hi everybody!

Couple of things:

Tom- Just an FYI.  I had several different kinds of CT scans over the years and none of them ever showed my Moya Moya.  In fact I had one right before an MRA which did show the MM but the CT showed everything was fine.  That's why it took me years to get diagnosed because most of the tests I was given always came out fine, until one smart doc went one step further and gave me the MRA.  Now, instead of angios I have been given follow-up SPECTs and also a Doppler test.  In fact, I'm going for another SPECT in 2 weeks.  I have a feeling that another surgery is coming up. :-/

Roni- funny you should mention the specific B12 test as I have low B12 and get monthly B12 injections.  Does anybody else have low B12?  Is this at all related to the Moya Moya?  

Lisa

Tom G---I am a new member, Pat M.  I am having the first EDAS surgery with Dr. Connolly on April 16th and the second about 2 months after.  I am also having a problem with severe fatigue and forgot to mention it to Dr. Connolly.  When I talk to his secretary, Pat, I will mention it to her.  I wil let you know the outcome.  Hope you continue to remain well and can work.  Did Dr. Connolly think you might need the surgery eventually if the disease continues to progress?  Be well. :)

Hi Pat,

Welcome!  I just read your story in the "guest book" and I have to say that I am just floored! [smiley=JAW_DROP.gif]  What a horror story you went through before your correct diagnosis of Moya Moya.  I know that it is often difficult to be diagnosed with and then treated for Moya Moya but your story takes the cake!   My heart goes out to you and I am so happy that you are finally on the road to better health.  

Keep us updated.
Lisa