As some of you know I have had several numbness in fingers on several different occassions(approximately 7 different occassions.  I had 2 different occassions on the same day last weak while out in Stamford with my sister(Seachelles) and again today which effected my pinky, and ring finger which lasted about 3-5 minutes.  I have gotten a doctors appointment but since I am a new patient I cant see her till June 24th.  So hopefully things will work out ok, but if not atleast I know a great doctor, right everyone.  

Shane

Shane-
I hate to think that this disease may be afflicting you too, but you are correct, at least you know a good doctor and you know the ropes!  I am thinking of you and hoping that maybe there is a simpler answer than MM.  Anything that comes, we are here for you!
Lots of hugs,
Chelsie

My ex-husband also started with tingling in the fingers, that's where everything started.  We though it was the beginning of carpel tunnel.

hey there thanks for the encouragement Chelsie and Canadian Girl.  I hope everything goes well, knowing Dr. Steinburg I am very comfident(I am sure I spelled his name wrong, ask my sister about my spelling, pretty bad).  I hope Chelsea that you are doing fine and feeling well.  It was nice meeting you your husband and parents out there).  And Canadian Girl just make sure you all get the proper test done to see if it is moya moya very important to get tested.  

hugs to everyone
Shane

Hi, Shane.  Sorry to read that you're having some possible moyamoya symptoms.  Glad you have an appointment, though!  

Do you know if your doctor would be able to go ahead and get you a prescription for an MRI with MR Angiogram, in advance?   It would be great if you were able to work on setting that up (in some places, it can take awhile) right now, instead of having the appointment, getting a prescription and then having to schedule the MR Angiogram from there (more waiting!)

If they don't want to do anything yet b/c you are a new patient, you could also try calling your general-practice physician (if you have one), and have them try calling the neurologist to get that started.  From my own experience, sometimes we've had an easier time getting things started if we've had our daughter's pediatrician call a specialist, than if we try to ask for things ourselves (and go through the receptionist).

Good luck!   Hope everything turns out OK.

Jenny

Hi everyone!  Just wanted to take a moment to say thank you for giving my brother encouragement today.  I think he was a little discouraged when he found out that he can't get into the doctor until June 24th.  But at least he told them he would like to be called if they get another appointment anytime soon.  

Let me give you a little background about my brother.  He just changed his general practitioner (Friday to be exact) to the same doctor I have since she is familiar with moyamoya.  He has to see her for a physical as he has never seen her before, and I felt that he should just go ahead and have one since it has been awhile since his last physical.  I'm pretty sure that he has HMO and not PPO like me.  His insurance is CIGNA.  So he has to be referred to a neurologist and even for the MRI.  I hope it is just a case of carpel tunnel syndrome and not MM.  

I'm just so worried about him.  Here I thought that I didn't have to worry as much as I did before, but lo and behold....it looks like it's striking us again (possibly).  I want to be there for him during the surgeries, but not sure if I will be able to get off work since I was just out for my own surgeries for 4-5 months.  Plus, I know my mother overextended herself at her job since she was with me for the long haul.  I just don't know what to do.  Today has not been a good day for me as all I can think about is him and this dreadful disease.  I'm a little angry right now and sad and overwhelmed.  There is no way that I'm going to let him go through this dreadful disease of MM alone.  I love my brother so much!

Michelle

Hey guys,

Try not to let your imaginations run too wild, o.k.?  The good thing is that Shane has taken steps to figure this out, and maybe "this" will be something as simple as carpal tunnel syndrome.  It's easy for me to say, but try to remember that worrying about it won't change anything!

Michelle, I can understand your whole thought process and concern of what to do with work, etc.  But let's take one step (and one day) at a time.  Shane, try not to be discouraged with the wait.  It's not very long in the overall scheme of things, and it will probably be fine.  If your symptoms become more severe, you know you can head to an emergency room.  Most important - we will be here to help both of you figure things out IF and when the time comes.

Cheer up . . . Idol's on tonight!

Love you both,
Jill

Michelle -

Jill is right!  

It's good that Shane has your experiences to rely on and is well aware of the signs to look for.  I'm praying that it is not MM!  

Shane - The waiting is the hardest part!  Hang in there!  Sending good vibes your way!

-Shari [smiley=hug.gif]

Shane, I know it's hard but try not to think the worst, as everyone else said, hopefully it's something completely unrelated to mm.  I think when theres a moyamoya survivor in a family, its easy to think the worst.  A couple of months ago, i went out side to play with my kids, when all of a sudden my left shoulder started tingling..then both arms, both feet, etc etc...I thought i was going to pass out, and ultimately thought oh my god im having a stroke...was so easy to believe that, because im so aware of the symptoms.  I rang my bro in law and asked him to talk me through this episode and that he was to come straight here if i suddenly stopped talking...I was terrified.  The episode lasted about 20minutes all up, after which i felt really woozy for another couple of hours.  I booked myself in for a doctors appointment 1st thing the next morning, and explained everything, and my doctor said i had a major panic attack, was just anxiety.  I asked how sure he was, and he told me that if i didnt have some kind of meltdown after everything ive been through for the last 4 and a half years, id be a robot...that although i didnt feel stressed at the time, my subconcious was...and it makes sense...I have not had another episode since.
I hope this gives you and your sister some hope Shane, things arent always what they seem.
My thoughts are with you and I wish you only the best.
Kalise

Shane,
 You have to think positive.  Remember that this is very very rare.  We are praying for you that is not what you are thinking.
                              Ron

Ron

I appreciate the support and I am being positive so far.  Dont know anything yet anyhow.  So waiting for June 24th for doctors appointment, and also might see if the doctor there can go ahead and scheduel an MRI might be a good idea that way I am ahead of the game.  Hope all is well there with Mark and you guys give everybody there a big hello for me

Shane

Shari thanks for the comments thanks for the good vibes.  I know one thing if I do have mm I know good doctors and that is a big plus


Kalise

Yeah this could be totally unrelated my systoms and all but figured better get it checked.  glad to hear you didnt have mm.  You know wish I lived in California would love to be there for each and every family for support, was such a gratifying experience last weak being with a couple of the famlies

Shane