Thanks for sharing that blog. It was certainly educational and makes us all aware of the need to persist and seek answers even if doctors aren't overly concerned.
@sylviam How are you doing? Being diagnosed with FMD after an event is overwhelming to say the least. Please know you are not alone in this journey. It takes many years to get use to a FMD body. It is important to find a physician you trust and that can work with you until you get a handle on what your body is telling you. The first few years I was visiting my specialist monthly to understand what my symptoms meant. I was always second guessing myself if I had signs of tia, but with the help with my amazing team of doctors together we learned. You will find out you are you best advocate... do not be afraid to ask questions. I would keep a calendar of symptoms and questions to show my doctor, that way he would get a better picture of what was happening in between visits. Going from doctor to doctor is overwhelming, but necessary when you have a multi-system disease. If it gets overwhelming please let them know, sometime we need a break from the hospital and clinical environment. You may notice that you have more fatigue now, that happens to so many FMDers. no one can tell us why but to me there is validation knowing other patients need "pajama days". Other patients are a great resource, use us, that is what we are here for. We may not always have the answer but we sure will try to point you in the right direction! What kind of work up have you had for FMD thus far? Have you been checked for brain aneurysms? Hang in there, one moment at a time!
Hi Kari, so I had been gone for a while. turns out i have another dissection. it was discovered when i went to a scheduled appointment for a ct scan cause i thought it was bad heart burn, i ended up in the emergency room on monday night for 10 hours and left with no kind of anything. i received a call from my primary which said to go to e.r i let them know i went that night because the hospital had called my primary office and that's what the dr oncall had suggested. they then said they were going to get the notes and would call me back. i was informed to call my vascular dr. which im waiting for a call back now. ugh so frustrating
@sylviam How are you doing? Being diagnosed with FMD after an event is overwhelming to say the least. Please know you are not alone in this journey. It takes many years to get use to a FMD body. It is important to find a physician you trust and that can work with you until you get a handle on what your body is telling you. The first few years I was visiting my specialist monthly to understand what my symptoms meant. I was always second guessing myself if I had signs of tia, but with the help with my amazing team of doctors together we learned. You will find out you are you best advocate... do not be afraid to ask questions. I would keep a calendar of symptoms and questions to show my doctor, that way he would get a better picture of what was happening in between visits. Going from doctor to doctor is overwhelming, but necessary when you have a multi-system disease. If it gets overwhelming please let them know, sometime we need a break from the hospital and clinical environment. You may notice that you have more fatigue now, that happens to so many FMDers. no one can tell us why but to me there is validation knowing other patients need "pajama days". Other patients are a great resource, use us, that is what we are here for. We may not always have the answer but we sure will try to point you in the right direction! What kind of work up have you had for FMD thus far? Have you been checked for brain aneurysms? Hang in there, one moment at a time!
@sylviam Thank you so much for letting us know!! I am so sorry to hear about your dissection! Where did the discover the dissection? Please let us know what you vascular doctor says! I understand your frustration and my heart goes out to you. This scenario is happening to often to FMD patients. I know your mind is on this and how to heal. I am curious if your vascular doctor will want to do any intervention for this dissection or let it heal on its own. Do you have a medical ID that you wear? Sending hugs and well wishes.
@sylviam How are you doing? Being diagnosed with FMD after an event is overwhelming to say the least. Please know you are not alone in this journey. It takes many years to get use to a FMD body. It is important to find a physician you trust and that can work with you until you get a handle on what your body is telling you. The first few years I was visiting my specialist monthly to understand what my symptoms meant. I was always second guessing myself if I had signs of tia, but with the help with my amazing team of doctors together we learned. You will find out you are you best advocate... do not be afraid to ask questions. I would keep a calendar of symptoms and questions to show my doctor, that way he would get a better picture of what was happening in between visits. Going from doctor to doctor is overwhelming, but necessary when you have a multi-system disease. If it gets overwhelming please let them know, sometime we need a break from the hospital and clinical environment. You may notice that you have more fatigue now, that happens to so many FMDers. no one can tell us why but to me there is validation knowing other patients need "pajama days". Other patients are a great resource, use us, that is what we are here for. We may not always have the answer but we sure will try to point you in the right direction! What kind of work up have you had for FMD thus far? Have you been checked for brain aneurysms? Hang in there, one moment at a time!
@kariulrich i know i'm all over the place with this. sorry. i left a call for the vascular so they're checking the hospital notes and are to call me back, i didn't hear from anyone today. this dr will be new to me as my vascular that did my previous procedure left boston mass general hospital for a position in new york. i don't know much yet. i don't even know if its part of the previous aortic dissection i had in 2015. thanks for hearing me out. no medical i.d. for what? from where?
@sylviam How are you doing? Being diagnosed with FMD after an event is overwhelming to say the least. Please know you are not alone in this journey. It takes many years to get use to a FMD body. It is important to find a physician you trust and that can work with you until you get a handle on what your body is telling you. The first few years I was visiting my specialist monthly to understand what my symptoms meant. I was always second guessing myself if I had signs of tia, but with the help with my amazing team of doctors together we learned. You will find out you are you best advocate... do not be afraid to ask questions. I would keep a calendar of symptoms and questions to show my doctor, that way he would get a better picture of what was happening in between visits. Going from doctor to doctor is overwhelming, but necessary when you have a multi-system disease. If it gets overwhelming please let them know, sometime we need a break from the hospital and clinical environment. You may notice that you have more fatigue now, that happens to so many FMDers. no one can tell us why but to me there is validation knowing other patients need "pajama days". Other patients are a great resource, use us, that is what we are here for. We may not always have the answer but we sure will try to point you in the right direction! What kind of work up have you had for FMD thus far? Have you been checked for brain aneurysms? Hang in there, one moment at a time!
@sylviam aortic dissection, that is a big artery! Do not hesitate to go back to the er if you have symptoms before you hear back! Sorry I was not clear about the medical id... a medical ID bracelet, in case of an emergency, something that lists you diagnosis. So you go to Boston Mass gen, they have a great vascular department, happy to hear you are in good hands.
Kari Ulrich, Alumna Mentor | @kariulrich | Jun 12, 2018
For those of you diagnosed with FMD here are some links that have been shared with me that you may find helpful:
RareConnect:
Here are the websites of the four FMD patient associations worldwide
Living with FMD Quality of Life Study: Diagnosed and living with fibromuscular dysplasia: A qualitative inquiry
Sherry M Bumpus, Christa Kuck, Steven T Heidt (2016, October 6).
Hi All, I am 32 years old and my doctor is pretty sure that I have FMD. I went for a yearly routine health exam and because my dad had a stroke at 60yo, my doctor decided to listen to my carotid arteries. To even her surprise she heard a bruit in my right carotid artery. For this reason, I went for an ultrasound and the vascular team said that my blood is flowing faster through my right carotid artery and believes I have FMD. I also didn't know this was a symptom and will tell my doctor, but I also have pulsatile tinnitus. I just figured it was due to bad sinuses. Anyway, while everyone is pretty sure I have FMD, since my labs are normal and I'm very healthy otherwise they're not sure they want me to undergo additional testing to confirm. I spoke with my doctor and he said he'll advocate for me to have the testing so I have answers. I should know in about a week and hope they approve further testing, especially as I continue to learn more. Any advice or low-key symptoms I should be looking out for is greatly appreciated. Thanks!
Thank you for sharing this interesting story @kariulrich FMD is a frightening disease. The fear of not knowing if or when an artery will dissect can cause anxiety and depression. Support groups are very helpful when you discover others with the same rare disease understand you.
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@cherfenn @sylviam @iagrrl @melanieangel @enoevian @fmdadvocate @sandrah1 I wanted to share with everyone (with permission) Johnathan Michael Thompson's experience with FMD. It really brought tears to my eyes, and I am so grateful he was willing to share his story and spread awareness. My stroke occurred over a three day period... By Johnathan Michael Thompson: https://fibromusculardysplasia.blogspot.com/2017/09/today-my-guest-blogger-shares-with-us.html
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2 ReactionsHi Kari, @kariulrich
Thanks for sharing that blog. It was certainly educational and makes us all aware of the need to persist and seek answers even if doctors aren't overly concerned.
Teresa
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1 ReactionHi Kari, so I had been gone for a while. turns out i have another dissection. it was discovered when i went to a scheduled appointment for a ct scan cause i thought it was bad heart burn, i ended up in the emergency room on monday night for 10 hours and left with no kind of anything. i received a call from my primary which said to go to e.r i let them know i went that night because the hospital had called my primary office and that's what the dr oncall had suggested. they then said they were going to get the notes and would call me back. i was informed to call my vascular dr. which im waiting for a call back now. ugh so frustrating
@sylviam Thank you so much for letting us know!! I am so sorry to hear about your dissection! Where did the discover the dissection? Please let us know what you vascular doctor says! I understand your frustration and my heart goes out to you. This scenario is happening to often to FMD patients. I know your mind is on this and how to heal. I am curious if your vascular doctor will want to do any intervention for this dissection or let it heal on its own. Do you have a medical ID that you wear? Sending hugs and well wishes.
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2 Reactions@kariulrich i know i'm all over the place with this. sorry. i left a call for the vascular so they're checking the hospital notes and are to call me back, i didn't hear from anyone today. this dr will be new to me as my vascular that did my previous procedure left boston mass general hospital for a position in new york. i don't know much yet. i don't even know if its part of the previous aortic dissection i had in 2015. thanks for hearing me out. no medical i.d. for what? from where?
@sylviam aortic dissection, that is a big artery! Do not hesitate to go back to the er if you have symptoms before you hear back! Sorry I was not clear about the medical id... a medical ID bracelet, in case of an emergency, something that lists you diagnosis. So you go to Boston Mass gen, they have a great vascular department, happy to hear you are in good hands.
For those of you diagnosed with FMD here are some links that have been shared with me that you may find helpful:
RareConnect:
Here are the websites of the four FMD patient associations worldwide
http://www.fmdsa.org ( USA - English)
http://www.fmdaa.org.au ( Australasia- English)
http://www.fmdgroep.nl ( Netherlands - Dutch)
http://www.fmd-be.be ( Belgium - French, Dutch, English)
Living with FMD Quality of Life Study: Diagnosed and living with fibromuscular dysplasia: A qualitative inquiry
http://journals.sagepub.com/doi/full/10.1177/1358863X16668419Sherry M Bumpus, Christa Kuck, Steven T Heidt (2016, October 6).
Hi All, I am 32 years old and my doctor is pretty sure that I have FMD. I went for a yearly routine health exam and because my dad had a stroke at 60yo, my doctor decided to listen to my carotid arteries. To even her surprise she heard a bruit in my right carotid artery. For this reason, I went for an ultrasound and the vascular team said that my blood is flowing faster through my right carotid artery and believes I have FMD. I also didn't know this was a symptom and will tell my doctor, but I also have pulsatile tinnitus. I just figured it was due to bad sinuses. Anyway, while everyone is pretty sure I have FMD, since my labs are normal and I'm very healthy otherwise they're not sure they want me to undergo additional testing to confirm. I spoke with my doctor and he said he'll advocate for me to have the testing so I have answers. I should know in about a week and hope they approve further testing, especially as I continue to learn more. Any advice or low-key symptoms I should be looking out for is greatly appreciated. Thanks!
Many of you have met @kariulrich and talked with her here about FMD. I thought you might enjoy reading a Connect Member Spotlight featuring her, published today: https://connect.mayoclinic.org/newsfeed-post/excited-to-find-others-with-my-rare-disease-meet-kariulrich/
Thank you for sharing this interesting story @kariulrich FMD is a frightening disease. The fear of not knowing if or when an artery will dissect can cause anxiety and depression. Support groups are very helpful when you discover others with the same rare disease understand you.
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