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Moyamoya.com Forum › Moyamoya Related Topics › Moyamoya Related Information and Support › One Step Closer

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One Step Closer (Read 3661 times)

Greg-NJ1

Experienced Poster

Offline

Mis-diagnosed with MM
in 2005, arterial restricion

Posts: 248
Teaneck, NJ
Gender: male

One Step Closer
Jan 12^th, 2006 at 1:25pm

Hi gang,

Wow, in two weeks, it will be the one year anivesary since my "attack". I just realized how many doctors and doctors appointments that it took before someone took me seriously. As you all know it has been a long road to get here.

As you may know from my other posts, my neurologist and my second opinion nuerologist have confirm unilateral MoyaMoya in the left side of my brain. Thankfully the right side looks healthy with no indications of MM.

Given that they are not indicating that it is an emergency, I have an appointment with Dr. C at Columbia on January 25th. So, we are now one step closer on the MM journey. Hopefully he will agree with the surgery and start working towards the big event.

Wish me luck,
Greg

I was misdiagnosed with MM in March of 2005. In January 2006, I was told it is not MM, but rather a massive restriction in the MC1 segment of my left carotid artery.

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mg12061

Old-Time Poster

Offline

Posts: 946
Albany, USA, usa, 492, 84, NY, New_York
Gender: female

Re: One Step Closer
Reply #1 - Jan 12^th, 2006 at 2:13pm

Sending ((luck)) and ((prayers)) your way.wow it sure has been a long road for you.the waiting is so hard.It was exactly 4 yrs ago this month that Kathleen was diagnosed.I remember those days leading up to our first trip to the ER like it was yesterday.It seemed like forever waiting for the surgery though.I hope things will move quickly in the right direction for you. keep us posted.
Mary Grace

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Lore

MM.com Benefactor

Offline

My brother Kevin (Cubbie)
has Moyamoya

Posts: 819
Delaware, USA, usa, 419, 133, OH, Ohio
Gender: female

Re: One Step Closer
Reply #2 - Jan 12^th, 2006 at 2:26pm

Hi Greg,

Glad to hear things are moving forward for you in treating your MMD. I didn't realize it had been a year since your episode. Persistence is everything when it comes to your health. Good for you for hanging in there.

Keep us posted on the outcome of your visit with Dr. C.

Here's wishing you lots and lots of luck. You'll be in our thoughts and prayers.

Hugs,

Lore

"What lies behind us and what lies before us are tiny matters compared to what lies within us." - Ralph Waldo Emerson

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gotchlorine

Old-Time Poster

Offline

Our daughter, Tara, lives
with MM

Posts: 776
San Jose, USA, usa, 24, 158, CA, California
Gender: female

Re: One Step Closer
Reply #3 - Jan 12^th, 2006 at 3:06pm

Wow Greg, as Lore said, I can't believe it's been a year! Yes, it can be a long road (it was 8 months after identifying that Tara had had 2 small strokes before we got her MM diagnosis). It's wonderful that things are moving forward for you now, and I'll look forward to hearing the outcome of your appointment with Dr. Connelly.

Hope you guys have a great time in Princeton this weekend! Someone please post some pictures, o.k.?

Smiley

, Jill

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Shan

Old-Time Poster

Offline

MM Survivor ~ May 27,
2005

Posts: 849
Honolulu, USA, usa, 376, 346, HI, Hawaii
Gender: female

Re: One Step Closer
Reply #4 - Jan 12^th, 2006 at 4:45pm

Hi Greg,

Yes, it has been a long journey, and we're so honored to be able to have been there with you...and you know that we will continue to be here with you and Olga along the way! Smiley

I think it's not uncommon for us to be misdiagnosed or not be taken seriously. It wasn't until my THIRD opinion until I was properly diagnosed. And, by then..I had to have an EMERGENCY double bypass on my right side. I didn't realize that I was having mini-strokes along the way. Unbelievable! It's more unbelievable that my neurologists (my first AND second opinions) didn't diagnose me with MM. Please note that I've since come to find out that they have referred other patients with MM to Dr. Steinberg. I was told that my situation was a little different, and I think that they thought my condition was too far gone for surgery. Instead, they tried treating me with medication alone! (Plavix and then Aggrenox).

Well...please know you're in our thoughts and prayers, Greg. Continue to do what you're doing...I know you're in good hands. Plus, you got Tom, Shari and the others near you on the East coast...and all of us here routing for you. Even me...all the way over here floating in the middle of the Pacific ocean. Wink

Take care,
Shan

« Last Edit: Jan 12^th, 2006 at 4:47pm by Shan »

"Love, Accept And Respect All Things And All Situations In Life … They Are Especially&&Designed For Your Personal Learning" ~Howard Willis

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STrantas MM.com Benefactor Offline MoyaMoya Survivor Since 2003 Posts: 1154 Philadelphia, USA, usa, 490, 122, PA, Pennsylvania Gender:	Re: One Step Closer Reply #5 - Jan 15^th, 2006 at 7:38pm gotchlorine wrote on Jan 12^th, 2006 at 3:06pm: Hope you guys have a great time in Princeton this weekend! Someone please post some pictures, o.k.? Jill - I just noticed this post (Sunday night - after we all said our goodbyes and left for home)! You are too funny! Nice decoy!!! -Shari
Back to top	A smile is contagious...start an epidemic! Dr. Scott did my surgeries - 12/29/03 and 1/5/04 IP Logged

tiomasai Experienced Poster Offline Arriba Arriba! Posts: 246 Queens, NY, Gender:	Re: One Step Closer Reply #6 - Jan 15^th, 2006 at 9:57pm Oh my Dodd - not nice Ms. Jill!!!!!!!!!!!! Trina
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