The Fibromuscular Dysplasia Society of America Support Community connects patients, families, friends and caregivers for support and inspiration... More about this group

Tinnutis and Flushing at Night

KristyLee
  • By KristyLee · New reply 7:37 am
  • Discussion in Living with fibromuscular dysplasia · 1 reply
  • Hi all, I have been diagnosed with renal FMD and have a chronic night pattern. After I fall asleep at some point I shift positions. This triggers a full body sweat and often is accompanied by rapid pulse ...

Fibromuscular Dysplasia Annual Conference

onekidneygalinnorcal

Send us your Pictures for our Poster!

onekidneygalinnorcal
  • By onekidneygalinnorcal · Posted yesterday at 10:26 am
  • Discussion in Living with fibromuscular dysplasia · 0 replies
  • Hi, We are putting together a poster of our FMD members for our upcoming FMDSA conference in May. Please send your pic if you are interested to admin@fmdsa.org by April 30th. Thank you! FMDSA.org ...

Appealing a denial of a medication from a drug company

FMDJADE
  • By FMDJADE · New reply yesterday at 1:55 am
  • Discussion in Living with fibromuscular dysplasia · 13 replies
  • I finally became stable with a blood pressure that for nearly 10 years had spikes, headaches,dizziness,blurred vision, etc. I have had three angioplasties and a right renal stent. Last December I began ...

Medic Alert Bracelet

Yellow_Rose
  • By Yellow_Rose · New reply April 21, 2014
  • Discussion in Aneurysms · 12 replies
  • I'm just curious if anyone wears a medic alert bracelet that says you have FMD ...

Dizziness and testing

BJ33410
  • By BJ33410 · New reply April 20, 2014
  • Discussion in Aneurysms · 8 replies
  • I just returned from Johns Hopkins Hospital where I had my annual follow up tests. I am fortunate to be under the care of Johns Hopkins as they employ a holistic approach to my FMD. As background, my ...

Carotid dissections

Lilrunnergirl
  • By Lilrunnergirl · New reply April 20, 2014
  • Journal · 22 replies
  • Recently diagnosed with bilateral carotid dissections. How long does it take for them to heal and how do you know when the symptoms you are experiencing require an ER visit? Recently back in with severe ...

Headaches and numbness in hands

Lilrunnergirl
  • By Lilrunnergirl · New reply April 18, 2014
  • Discussion in Newly diagnosed · 12 replies
  • Are headaches and numbness just something that happen with FMD? All scans show no change so folks cannot explain the headaches and numbness in hands. Has anyone else had those. Feel as though the doctors ...

FMD/Dissections in latest issue of Stroke Connectin Magazine

SmilinDeb
  • By SmilinDeb · New reply April 18, 2014
  • Discussion in Living with fibromuscular dysplasia · 5 replies
  • Hi Everyone! I just received the latest issue/Spring 2014 of the Stroke Connection Magazine. I was pleasantly surprised to see an article written about Uncommon Causes of stroke and while reading it under ...

FMD Awareness

onekidneygalinnorcal

Newly diagnosed

Laurie01
  • By Laurie01 · New reply April 16, 2014
  • Discussion in Newly diagnosed · 8 replies
  • Hi everyone, I was just diagnosed today with FMD. I had a bad nose bleed in July, 2012 and ended up in the ER for that and they took my blood pressure and it was 300/220 and that started the ball rolling ...

Worried about the Future

Chrystal_S
  • By Chrystal_S · New reply April 16, 2014
  • Discussion in Renal fibromuscular dysplasia · 4 replies
  • I've had high blood pressure since I was about 14 and for a very long time no one could figure out what was causing it. I was diagnosed with renal FMD leading to my left kidney in early 2007 when I was ...

Angioseal

donstrat
  • By donstrat · New reply April 16, 2014
  • Discussion in Renal fibromuscular dysplasia · 3 replies
  • It has been two days since I had an angiography of my kidneys and leg by Dr Laird at Davis Medical. It turned out I did not need to have an angioplasty of the kidney arteries as the FMD there was mild ...

"A wake-up call from a young e-patient: 'I need to be heard'”

John2
  • By John2 · Posted April 15, 2014
  • Journal · 0 replies
  • From: John Novack, Communications Director, Inspire 4/15/14 Dear members, I am writing to share with you a new guest column in "Scope," the Stanford University School of Medicine's medical blog: "A wake-up ...

Multiple dissections

sartim
  • By sartim · New reply April 10, 2014
  • Discussion in Dissections · 1 reply
  • I just had my 10th dissection and learned yesterday that I now have occlusions to my legs b/c of FMD. If you have had multiple dissections, how are you handling it emotionally? I am at my wits' end and ...

Web Chat with CC Dr. Gornik and Pam Mace

onekidneygalinnorcal
  • By onekidneygalinnorcal · Posted April 9, 2014
  • Discussion in Living with fibromuscular dysplasia · 0 replies
  • Hi Everyone. In case you didn't see it on our FB page don't miss the Web Chat tomorrow with Dr. Gornik an Pam Mace. You can send your question in today. Remember if you are not able to make Web Chat a ...

Dr. Jackie Saw

onekidneygalinnorcal
  • By onekidneygalinnorcal · New reply April 5, 2014
  • Discussion in FMD research · 3 replies
  • Congratulations to Dr Jackie Saw who was successful in obtaining a major grant from the Heart and Stroke Foundation for the Canadian SCAD Study, which is a national registry involving over 17 sites in ...

Coronary FMD

larchelm
  • By larchelm · New reply April 5, 2014
  • Journal · 7 replies
  • I first was diagnosed with FMD in 2012 , bilateral carotid arteries & vertebral arteries. In November 2013 I developed chest pressure & irregular heart beat so I went to the ER. I was told my cardiac ...

WebChat with Dr. Gornik and Pam Mace

onekidneygalinnorcal

Sort of new and VERY confused

KNoi
  • By KNoi · New reply April 4, 2014
  • Discussion in Newly diagnosed · 20 replies
  • Hi Folks, I'm new to this site, this diagnosis, and message boards in general. But here it goes :) I was very lucky in 2012 when on Labor Day I went to the hospital with the worst migraine of my life ...

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The Fibromuscular Dysplasia Society of America Support Community connects patients, families, friends and caregivers for support and inspiration. This community is sponsored by the Fibromuscular Dysplasia Society of America, an Inspire trusted partner.