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Larry

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I Love MM.com!

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Austintown,Oh
Gender: male

Doctors need educated
Jul 22^nd, 2010 at 4:16pm

Today I went with my wife to her Doctor. She has been exercising and eating healthy to lose weight since Feb. She has been very successful (51lbs). She has been using a trainer and he has been very good helping her toward her goal. He has remarked how she seems to bruise easily and suggested she see her Dr. Now to my point, Dr did routine checks and exam and ordered blood work. He jokingly said I am hoping I don't find some rare disease ! We both remarked "Let's hope not . We already have one! At which he asked what disease were we talking about. I showed him my healing incision on the right side of my head and asked him what he knew about Moyamoya. He was puzzled and asked us what we were talking about. After a long explanation and show and tell session he said I should probably read up on it and it's symptoms. This is exactly what my PCP said when I informed him that is what the CLeveland Clinic diagnosed me with. It seems this disease needs more publicity.

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hillary Senior Poster Offline My daughter Holly has MM Posts: 340 new braunfels, USA, usa, 279, 285, TX, Texas Gender:	Re: Doctors need educated Reply #1 - Jul 22^nd, 2010 at 9:45pm I agree with you about Doctors needing to know more. Recently my daughter (has moyamoya) was in the hospital and a few of the doctors did not know what it was. When I took her to the ER, that doctor didn't know anything about it either. It can be frustrating!
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dmm New Poster Offline I Love MM.com! Posts: 36	Re: Doctors need educated Reply #2 - Jul 23^rd, 2010 at 6:19am I agree too, but some doctors don't want to listen to their patients or their stressed mothers. It is so frustrating when the doctors don't believe or listen. Can anyone direct me to some good sites to gain information? Need to understand more about this disease.
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Becky

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Stroke10/03, Diagnosed6/04,
Unilateral Surgery9/04

Posts: 532
Minneapolis, USA, usa, 303, 84, MN, Minnesota
Gender: female

Re: Doctors need educated
Reply #3 - Jul 23^rd, 2010 at 9:56am

I agree more doctors need to be educated, but I don't think we can expect them to know all the rare disorders/symptoms/diseases.

I had a stroke and they were trying to figure out why I has it. I went through a bunch of testing to have the radiologist technician say that he just got back from a convention that was about rare vascular disorders and mentioned MM! Since it was a rare disorder he mentioned it to me; normally they just do the tests and you have to get the results from your neurologist but he mentioned it any way so i could research and talk to my neurologist. My old neurologist said she suspected MM but dismissed the idea since I am not Asian. Well I got a second opinion and I have MM and a new neurologist. The moral of my story is not everyone knows about it. Even if they do know about MM they don't like to conclude to any rare disorders right away.

I understand the frustration having to explain MM every time you see a new doctor, but it helps spread the word. If you know someone who has a rare disorder you would research it just out of curiosity. I direct people to this wed sight since there is allot of great accurate information about everything you want to know about MM. The more we know about it helps us protect ourselves or our loved ones from doctors who don't know anything about the disorder from prescribing medication or treatments that could harm us. I also have my neurologist's phone number on a medical ID card I carry so if they have any questions about a treatment they can call him.

I hope this helps,
Becky

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What doesn't kill us, makes us stronger. And sometimes leaves a cool looking scar. STA-MCA bypass and EMS Surgeries done at same time at the Mayo clinic

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hillary Senior Poster Offline My daughter Holly has MM Posts: 340 new braunfels, USA, usa, 279, 285, TX, Texas Gender:	Re: Doctors need educated Reply #4 - Jul 24^th, 2010 at 12:01pm Becky, the Medical ID card is a great idea. My daughter has a Medic Alert Bracelet with information on it as well. I love that she has it.
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Larry

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I Love MM.com!

Posts: 31
Austintown,Oh
Gender: male

Re: Doctors need educated
Reply #5 - Jul 24^th, 2010 at 9:09pm

Glad to see the responses. I guess what I am trying to get across is most primary care physcians around Youngstown don't know about Moyamoya. I must admit until this Spring neither did I but I am not in the medical field. My diagnosis would not have come had my Dr. not given me Relpax for my migraines he said I was having for the last 10 yrs. If not for my adverse reaction to the drug I might not been given the MRI/MRA that led me down the path to be diagnosed at the Cleveland Clinic.

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Becky

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Stroke10/03, Diagnosed6/04,
Unilateral Surgery9/04

Posts: 532
Minneapolis, USA, usa, 303, 84, MN, Minnesota
Gender: female

Re: Doctors need educated
Reply #6 - Jul 26^th, 2010 at 10:29am

Larry,
My Stroke was caused by a doctor treating a migraine with Relpax. but I was not diagnosed with MM until after all the testing I mentioned above.

My OBGYN was even interested, so he did his own research so he could give me the correct kind of birth control, or know if my body could handle a natural birth. I know you don't have to worry about that kind of stuff but i thought I would share.
Becky

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What doesn't kill us, makes us stronger. And sometimes leaves a cool looking scar. STA-MCA bypass and EMS Surgeries done at same time at the Mayo clinic

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mg12061

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

Re: Doctors need educated
Reply #7 - Jul 26^th, 2010 at 12:44pm

Becky, I hope you don't mind me asking but did your OB/GYN find a birth control? The reason I'm asking is I'm looking into any options to "regulate" my daughter's periods and or lessen the frequency. She is not independent in the care of hygene in regard to this, since she not only has Down syndrome but the after-affects of several strokes. I have an appointment with my OB?GYN next month and would like to discuss this with her. Anythin I know ahead of time will be helpful.
Mary Grace

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Erinmom2

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Mom to Malachi Moyamoya
surgery on June 28th
2010.

Posts: 34
Illinois

Re: Doctors need educated
Reply #8 - Jul 26^th, 2010 at 9:04pm

We took my son to 3 ER's before someone FINALLY diagnosed with a major stroke. In the course of 1 weeks we were transfered to 2 hospitals. Not one single doctor we have come across knows what Moyamoya is. It's VERY frustrating. I feel like someone need to publish a Moyamoya handbook that we can purchase to give to our doctors or a website with all the FAQ's about Moyamoya.

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Skay5709

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Re: Doctors need educated
Reply #9 - Jul 26^th, 2010 at 10:50pm

Larry, I agree that there is a need for more publicity about mm. I was diagnosed after a major stroke in 2001. I have been back to the ER two times for TIA's at local hospital and my family still has to explain what mm is. Then they air-lift to University of Iowa Hospital's because they don't know what to do. Very frustrating.

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Becky

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Stroke10/03, Diagnosed6/04,
Unilateral Surgery9/04

Posts: 532
Minneapolis, USA, usa, 303, 84, MN, Minnesota
Gender: female

Re: Doctors need educated
Reply #10 - Jul 27^th, 2010 at 9:58am

Erin's mom,
That is the best Idea ever!! I totally think any one with MM should have a panthlyt with facts about MM. Like they have about when you get a minor surgery done. That way we don't have to explain what MM is. it could have what medications to avoid and list the types of surgeries we could have had!! I wonder if we could get Dr.Steinberg or Dr.Scott to make a handbook or Medical card for a wallet?

Mary Grace,
My Ob suggested the progestogen only but recommends to use non-hormone based Birth Control (BC). I personally have an IUD called Mirena. I use the to prevent pregnancy not for regulating my flows.
Hope this helps,
Becky

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« Last Edit: Jul 27^th, 2010 at 11:06am by Becky »

What doesn't kill us, makes us stronger. And sometimes leaves a cool looking scar. STA-MCA bypass and EMS Surgeries done at same time at the Mayo clinic

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Runity

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I was diagnosed with MM
since May 26, 2005

Posts: 40
Brentwood, USA, usa, 392, 195, TN, Tennessee
Gender: female

Re: Doctors need educated
Reply #11 - Aug 14^th, 2010 at 11:06am

I agree the awareness for MM needs to be out in the community. When people hear my story, I tell them about my MM symptoms and misdiagnosis. If they want more information I send them to this site. I have been lucky that the doctors that I encounter now are willing to learn about the condition and several of them have asked if I could write a book about it and try to get it into the medical textbooks. Now, as a student on the PHD program in Health Psychology I am going to spread the word among my classmates and professors. The more medical professions get involved in learning about it the better it will be that they can help their patients. I believe it should be something that radiologist need to study and learn too. Usually my scar on my head is the conversation starter especially when I pull my hair up.

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