MWVA invites you to our next support group meeting!
Saturday, April 30, 2011
10:00 am - 3:00 pm
Mayo Clinic Health System: Albert Lea Medical Center
404 West Fountain Street
Albert Lea, MN 56007
Meeting Room 20
“This ISN’T What I Signed Up For”
Guest Speakers:
Mark Patrick, Licensed Marriage and Family Therapist
Polly Patrick, High School Teacher, Teacher Instructional Coach Inspirational Speaker
Come share your experience with others. A light lunch will be provided.
Meeting FREE of Charge.
Please Register by April 23, 2011: email us with the number attending and updated contact info:
mwva@me.com
MWVA will be collecting new and gently used items, to be sold on ebay for the Joe Niekro Foundation. Proceeds to benefit brain aneurysm research, education and awareness.
For questions please email Jennifer or Kari at mwva@me.com
We hope you can join us!
Thursday, March 31, 2011
Tuesday, March 8, 2011
March 3, 2011 Transcript from Twitter FMDChat
Twitter FMDChat is Tonight from 7pm-8pm CST! FMDChat is a Twitter Community to open communication and expand knowledge of FMD. #FMDchat
We will break down our chat into twitter questions- T1,T2, T3 so please reply according to the the tweet question. #FMDchat
FMDChat
FMDChat is open to the public and will cover topics related to Fibromuscular Dysplasia. #FMDchat
mdulrich Michael Ulrich
test #fmdchat
jenniferm7373 Jennifer Moreen
test #FMDChat
FMDChat
Welcome to FMDChat FMDChat is a Twitter Community to open communication and expand knowledge of FMD. #FMDchat
FMDChat
Our Chat will start in a moment, please take a moment to introduce yourself remember to use #FMDChat
FMDGirl Kari Ulrich
Kari here- FMD pt- carotids, renal, femoral and Mals! Looking forward to meeting you all! #FMDChat
FMDChat FMDChat
Welcome Roxy Girl! #FMDChat
jenniferm7373 Jennifer Moreen
I'm Jennifer Moreen in Minnesota, have FMD in coronary arteries, corotids, vertebrals, illiacs and right renal. #FMDChat
mdulrich Michael Ulrich
Michael Ulrich MD, Family Practice doc here for FMD chat. #fmdchat
FMDChat FMDChat
I want to remind everyone Brain Aneurysm Awareness week is March 14-20, 2011 http://joeniekrofoundation.com/ #FMDchat
FMDChat FMDChat
Welcome Jennifer! #FMDchat
FMDChat FMDChat
T1- How has FMD changed your life? #FMDchat
FMDGirl Kari Ulrich
T1- I have a lot of pajama days!! #FMDchat
mdulrich Michael Ulrich
T1- FMD has changed life significantly. Learned there are good days / bad days. #fmdchat
FMDChat FMDChat
I get it roxy! I think it has invaded every vascular bed in my body! #fmdchat
jenniferm7373 Jennifer Moreen
My life has changed significantly -- lots of meds, lower energy, a new "normal" that is hard to get used to. #fmdchat
FMDGirl Kari Ulrich
I am on 4 blood pressure meds and my BP still is not in good control, very fatigued- biggest complaint I have #FMDChat
FMDGirl Kari Ulrich
Jennifer and Michael- how much do you think the side effect of BP meds contribute to fatigue vs the disease? #FMDChat
jenniferm7373 Jennifer Moreen
That's a good questions. I think meds are a big factor - the b.p. meds slow everything down. The disease itself? Not sure.. #fmdchat
FMDChat FMDChat
@RoxyGirl1013 I understand be scared being by yourself! #FMDChat
mdulrich Michael Ulrich
I think that BP meds can contribute to fatigue in many ways. But every person with FMD is unique. #fmdchat
jenniferm7373 Jennifer Moreen
For me a good day is: no headache, enough energy to work and get things done and stay up until 10 p.m. #fmdchat
FMDChat FMDChat
T2- What do you want Doctors to know about your disease? #FMDchat
jenniferm7373 Jennifer Moreen
Not sure if this is the right forum, but Michael, I'm curious of your thoughts on adding CoQ10 for energy and cell health. Risks? #fmdchat
FMDGirl Kari Ulrich
I would like for docs to understand FMD is a VASCULAR DISEASE, we need close monitoring, we need a team of physicians #FMDChat
mdulrich Michael Ulrich
My understanding is that CoQ10 is a natural substance produced in the body. Statins deplete it. Thumbs up! #fmdchat
mdulrich Michael Ulrich
I also think that a good omega 3 fish oil is important. #fmdchat
mdulrich Michael Ulrich
Agree Kari - patients need a doc who knows FMD and can follow them regularly. #fmdchat
jenniferm7373 Jennifer Moreen
Good to know, thanks! I've been told by my cardiologist and other docs to take fish oil supplements. Very helpful. #fmdchat
FMDChat FMDChat
@RoxyGirl1013 FMD patients are very knowledgeable in their disease, many docs learn from the info we bring them to the office #FMDChat
CuteNicuNurse Jen W.
Very!! :)RT @mdulrich: I also think that a good omega 3 fish oil is important. #fmdchat
FMDChat FMDChat
T3- What helps you get through a day with FMD? #FMDchat
FMDChat FMDChat
Welcome @CuteNicuNurse- we are chatting about FMD a vascular disease- just curious have your heard of it? #FMDchat
FMDChat FMDChat
@CuteNicuNurse FMD can affect infants too! It can lead to stroke, kidney problems- depending on the vascular bed #FMDChat #FMDchat
mdulrich Michael Ulrich
I also think diet important - specifically diet low in too many "quick carbs". #fmdchat
PracticalWisdom Lisa Fields
Sorry for the interruption but wanted to give my Blessings for your Chat tonight. #fmdchat
PracticalWisdom Lisa Fields
I'm Lisa Curious Adult Education Scholar who morphs the ho-hum into compelling. Speaker, Trainer, Presentation Designer, Rascal. #fmdchat
jenniferm7373 Jennifer Moreen
Michael, I agree 100% about diet, but curious why specifically quick carbs. #fmdchat
mdulrich Michael Ulrich
In terms of diet - I am speaking of general cardiovascular health - not just FMD! #fmdchat
FMDChat FMDChat
Thank you @ParticalWisdom for joining us! #FMDchat
FMDChat FMDChat
I disagree with the quick carb having anything to do with FMD #FMDchat
jenniferm7373 Jennifer Moreen
Got it. So true because quick carbs drain our energy overall, which is the last thing we need! #fmdchat
mdulrich Michael Ulrich
A diet balance of too many quick carbs leads to high insulin which is bad - need to avoid insulin spikes. #fmdchat
FMDChat FMDChat
Jennifer that makes sense to me. #FMDChat
jenniferm7373 Jennifer Moreen
I'm curious if anyone feels that FMD has had any positive influence on their life... any new, good things to come of it? #fmdchat
mdulrich Michael Ulrich
Too many insulin spikes could lead to insulin resistance and type 2 diabetes which can increase to heart disease risk - #fmdchat
mdulrich Michael Ulrich
All FMDers need to minimize ALL risks for heart diease. #fmdchat
FMDChat FMDChat
You are right @cuteNICUNurse, very rare in infants, I am curious if SIDS could be connected to FMD in some cases #FMDchat
FMDChat FMDChat
@CuteNicuNurse FMD is not commonly looked for on autopsy #FMDchat
PracticalWisdom Lisa Fields
@jenniferm7373: That's a great Question. I'd also like to know if there is any new research coming out. Where do you find hope. #fmdchat
FMDChat FMDChat
Jennifer- positive influence- YES! I am much more proactive in my health and respect my body much more #FMDChat
jenniferm7373 Jennifer Moreen
@PracticalWisdom Many of us are in various studies, not much is known yet about FMD but we're trying to change that #fmdchat
FMDChat FMDChat
Great Question @PracticalWisdom! http://bit.ly/fxZon7 #MCCSM #FMDChat
PracticalWisdom Lisa Fields
@jenniferm7373 I'm impressed that you and @FMDGirl are working so hard. We must get the word out I"m impressed with the efforts. #fmdchat
mdulrich Michael Ulrich
one big source of research will be the FMD patient registry through FMDSA. #fmdchat
FMDChat FMDChat
FMD Research: http://bit.ly/e9jMLO - More money is needed for research #FMDchat
mdulrich Michael Ulrich
much of the research has been driven by Dr Jeff Olin and other dedicated Vascular docs. #fmdchat
FMDChat FMDChat
@PracticalWisdom you have been a great strength and resource, I am grateful for your wisdom ;) #FMDChat
FMDChat FMDChat
T4- How can FMD awareness be spread more quickly and accurately? #FMDchat
PracticalWisdom Lisa Fields
Looks like an Impressive MD: Dr. Jeff Olin-http://www.mountsinai.org/profiles/jeffrey-w-olin #fmdchat
jenniferm7373 Jennifer Moreen
Thank you, PracticalWisdom. I'm new to twitter and don't know how to reply to you w/the @ sign! LOL #fmdchat
FMDChat FMDChat
Roxy asks: Michael, curious to know your opinion on the correlation between FMD and adhesions, if any.#FMDchat
mdulrich Michael Ulrich
Patients also benefit from an "FMD Clinic" model where they can be followed. Cleveland Clinic with Dr Heather Gornik is example. #fmdchat
PracticalWisdom Lisa Fields
@jenniferm7373: My pleasure. You are doing great. My Big secret is TweetChat. There are columns that give quick choices. #fmdchat
FMDChat FMDChat
Roxy: Don't forget to take the FMD patient retreat survey! http://www.surveymonkey.com/s/YKBHN2X #FMDchat
mdulrich Michael Ulrich
re question about adhesions and fmd - I agree there is correlation and likely related to connective tissue component. #fmdchat
PracticalWisdom Lisa Fields
RT @mdulrich: Pt's benefit from an "FMD Clinic" model. where they can b followed. Cleveland Clinic Dr Heather Gornik is example. #fmdchat
FMDChat FMDChat
@PracticalWisdom I am still learning tweetchat- we need to have a phone conference Lisa :) #FMDchat
mdulrich Michael Ulrich
my question is how many out there have fmd and are asymptomatic? #fmdchat
FMDChat FMDChat
My dream is that Mayo Clinic Rochester get an "FMD Clinic" it is so needed! We need a team of docs #MCCSM #FMDChat
mdulrich Michael Ulrich
to what extent does fmd "spread" in a patient - and what are the triggers? #fmdchat
PracticalWisdom Lisa Fields
What R classic symptoms might be missed?RT @mdulrich: my question is how many out there have fmd and are asymptomatic? #fmdchat
FMDChat FMDChat
We are about out of time- I want to thank each of you for participating in our first FMD Chat! #FMDchat
jenniferm7373 Jennifer Moreen
Good question about asymptomatic people. There are likely very many. Many of us were basically symptom free until a crisis hit. #fmdchat
mdulrich Michael Ulrich
classic symptoms depend on where FMD is. In carotids it is the "whoosh" sound with a bruit. #fmdchat
FMDChat FMDChat
Thank you so much for joining us on FMDChat. Please check back for our next FMDChat date and time! #FMDchat
FMDChat FMDChat
Questions about FMDChat can be directed to mwva@me.com #FMDchat
mdulrich Michael Ulrich
other symptoms can be secondary related to hypertension and other effects of the disease - fatigue, headaches, etc.. #fmdchat
FMDChat FMDChat
Don't Forget! Brain Aneurysm Awareness week is March 14-20, 2011 http://joeniekrofoundation.com/ #FMDchat
mdulrich Michael Ulrich
of course, fmd can lead to strokes, heart attacks. #fmdchat
PracticalWisdom Lisa Fields
Thank you so much for the information and chat tonight. How exciting to have your first FMDChat. Congrats! #fmdchat
FMDChat FMDChat
Goodnight everyone! Thank you!! #FMDchat
PracticalWisdom Lisa Fields
Good night @FMDGirl @mdulrich @Jennifer7373 http://www.youtube.com/watch?v=cp7_u0kcQRo #fmdchat
PracticalWisdom Lisa Fields
@FMDChat: Congrats on First #FMDchat. Proud U R my Friend/Teacher. http://www.youtube.com/watch?v=axLRUszuu9I
We will break down our chat into twitter questions- T1,T2, T3 so please reply according to the the tweet question. #FMDchat
FMDChat
FMDChat is open to the public and will cover topics related to Fibromuscular Dysplasia. #FMDchat
mdulrich Michael Ulrich
test #fmdchat
jenniferm7373 Jennifer Moreen
test #FMDChat
FMDChat
Welcome to FMDChat FMDChat is a Twitter Community to open communication and expand knowledge of FMD. #FMDchat
FMDChat
Our Chat will start in a moment, please take a moment to introduce yourself remember to use #FMDChat
FMDGirl Kari Ulrich
Kari here- FMD pt- carotids, renal, femoral and Mals! Looking forward to meeting you all! #FMDChat
FMDChat FMDChat
Welcome Roxy Girl! #FMDChat
jenniferm7373 Jennifer Moreen
I'm Jennifer Moreen in Minnesota, have FMD in coronary arteries, corotids, vertebrals, illiacs and right renal. #FMDChat
mdulrich Michael Ulrich
Michael Ulrich MD, Family Practice doc here for FMD chat. #fmdchat
FMDChat FMDChat
I want to remind everyone Brain Aneurysm Awareness week is March 14-20, 2011 http://joeniekrofoundation.com/ #FMDchat
FMDChat FMDChat
Welcome Jennifer! #FMDchat
FMDChat FMDChat
T1- How has FMD changed your life? #FMDchat
FMDGirl Kari Ulrich
T1- I have a lot of pajama days!! #FMDchat
mdulrich Michael Ulrich
T1- FMD has changed life significantly. Learned there are good days / bad days. #fmdchat
FMDChat FMDChat
I get it roxy! I think it has invaded every vascular bed in my body! #fmdchat
jenniferm7373 Jennifer Moreen
My life has changed significantly -- lots of meds, lower energy, a new "normal" that is hard to get used to. #fmdchat
FMDGirl Kari Ulrich
I am on 4 blood pressure meds and my BP still is not in good control, very fatigued- biggest complaint I have #FMDChat
FMDGirl Kari Ulrich
Jennifer and Michael- how much do you think the side effect of BP meds contribute to fatigue vs the disease? #FMDChat
jenniferm7373 Jennifer Moreen
That's a good questions. I think meds are a big factor - the b.p. meds slow everything down. The disease itself? Not sure.. #fmdchat
FMDChat FMDChat
@RoxyGirl1013 I understand be scared being by yourself! #FMDChat
mdulrich Michael Ulrich
I think that BP meds can contribute to fatigue in many ways. But every person with FMD is unique. #fmdchat
jenniferm7373 Jennifer Moreen
For me a good day is: no headache, enough energy to work and get things done and stay up until 10 p.m. #fmdchat
FMDChat FMDChat
T2- What do you want Doctors to know about your disease? #FMDchat
jenniferm7373 Jennifer Moreen
Not sure if this is the right forum, but Michael, I'm curious of your thoughts on adding CoQ10 for energy and cell health. Risks? #fmdchat
FMDGirl Kari Ulrich
I would like for docs to understand FMD is a VASCULAR DISEASE, we need close monitoring, we need a team of physicians #FMDChat
mdulrich Michael Ulrich
My understanding is that CoQ10 is a natural substance produced in the body. Statins deplete it. Thumbs up! #fmdchat
mdulrich Michael Ulrich
I also think that a good omega 3 fish oil is important. #fmdchat
mdulrich Michael Ulrich
Agree Kari - patients need a doc who knows FMD and can follow them regularly. #fmdchat
jenniferm7373 Jennifer Moreen
Good to know, thanks! I've been told by my cardiologist and other docs to take fish oil supplements. Very helpful. #fmdchat
FMDChat FMDChat
@RoxyGirl1013 FMD patients are very knowledgeable in their disease, many docs learn from the info we bring them to the office #FMDChat
CuteNicuNurse Jen W.
Very!! :)RT @mdulrich: I also think that a good omega 3 fish oil is important. #fmdchat
FMDChat FMDChat
T3- What helps you get through a day with FMD? #FMDchat
FMDChat FMDChat
Welcome @CuteNicuNurse- we are chatting about FMD a vascular disease- just curious have your heard of it? #FMDchat
FMDChat FMDChat
@CuteNicuNurse FMD can affect infants too! It can lead to stroke, kidney problems- depending on the vascular bed #FMDChat #FMDchat
mdulrich Michael Ulrich
I also think diet important - specifically diet low in too many "quick carbs". #fmdchat
PracticalWisdom Lisa Fields
Sorry for the interruption but wanted to give my Blessings for your Chat tonight. #fmdchat
PracticalWisdom Lisa Fields
I'm Lisa Curious Adult Education Scholar who morphs the ho-hum into compelling. Speaker, Trainer, Presentation Designer, Rascal. #fmdchat
jenniferm7373 Jennifer Moreen
Michael, I agree 100% about diet, but curious why specifically quick carbs. #fmdchat
mdulrich Michael Ulrich
In terms of diet - I am speaking of general cardiovascular health - not just FMD! #fmdchat
FMDChat FMDChat
Thank you @ParticalWisdom for joining us! #FMDchat
FMDChat FMDChat
I disagree with the quick carb having anything to do with FMD #FMDchat
jenniferm7373 Jennifer Moreen
Got it. So true because quick carbs drain our energy overall, which is the last thing we need! #fmdchat
mdulrich Michael Ulrich
A diet balance of too many quick carbs leads to high insulin which is bad - need to avoid insulin spikes. #fmdchat
FMDChat FMDChat
Jennifer that makes sense to me. #FMDChat
jenniferm7373 Jennifer Moreen
I'm curious if anyone feels that FMD has had any positive influence on their life... any new, good things to come of it? #fmdchat
mdulrich Michael Ulrich
Too many insulin spikes could lead to insulin resistance and type 2 diabetes which can increase to heart disease risk - #fmdchat
mdulrich Michael Ulrich
All FMDers need to minimize ALL risks for heart diease. #fmdchat
FMDChat FMDChat
You are right @cuteNICUNurse, very rare in infants, I am curious if SIDS could be connected to FMD in some cases #FMDchat
FMDChat FMDChat
@CuteNicuNurse FMD is not commonly looked for on autopsy #FMDchat
PracticalWisdom Lisa Fields
@jenniferm7373: That's a great Question. I'd also like to know if there is any new research coming out. Where do you find hope. #fmdchat
FMDChat FMDChat
Jennifer- positive influence- YES! I am much more proactive in my health and respect my body much more #FMDChat
jenniferm7373 Jennifer Moreen
@PracticalWisdom Many of us are in various studies, not much is known yet about FMD but we're trying to change that #fmdchat
FMDChat FMDChat
Great Question @PracticalWisdom! http://bit.ly/fxZon7 #MCCSM #FMDChat
PracticalWisdom Lisa Fields
@jenniferm7373 I'm impressed that you and @FMDGirl are working so hard. We must get the word out I"m impressed with the efforts. #fmdchat
mdulrich Michael Ulrich
one big source of research will be the FMD patient registry through FMDSA. #fmdchat
FMDChat FMDChat
FMD Research: http://bit.ly/e9jMLO - More money is needed for research #FMDchat
mdulrich Michael Ulrich
much of the research has been driven by Dr Jeff Olin and other dedicated Vascular docs. #fmdchat
FMDChat FMDChat
@PracticalWisdom you have been a great strength and resource, I am grateful for your wisdom ;) #FMDChat
FMDChat FMDChat
T4- How can FMD awareness be spread more quickly and accurately? #FMDchat
PracticalWisdom Lisa Fields
Looks like an Impressive MD: Dr. Jeff Olin-http://www.mountsinai.org/profiles/jeffrey-w-olin #fmdchat
jenniferm7373 Jennifer Moreen
Thank you, PracticalWisdom. I'm new to twitter and don't know how to reply to you w/the @ sign! LOL #fmdchat
FMDChat FMDChat
Roxy asks: Michael, curious to know your opinion on the correlation between FMD and adhesions, if any.#FMDchat
mdulrich Michael Ulrich
Patients also benefit from an "FMD Clinic" model where they can be followed. Cleveland Clinic with Dr Heather Gornik is example. #fmdchat
PracticalWisdom Lisa Fields
@jenniferm7373: My pleasure. You are doing great. My Big secret is TweetChat. There are columns that give quick choices. #fmdchat
FMDChat FMDChat
Roxy: Don't forget to take the FMD patient retreat survey! http://www.surveymonkey.com/s/YKBHN2X #FMDchat
mdulrich Michael Ulrich
re question about adhesions and fmd - I agree there is correlation and likely related to connective tissue component. #fmdchat
PracticalWisdom Lisa Fields
RT @mdulrich: Pt's benefit from an "FMD Clinic" model. where they can b followed. Cleveland Clinic Dr Heather Gornik is example. #fmdchat
FMDChat FMDChat
@PracticalWisdom I am still learning tweetchat- we need to have a phone conference Lisa :) #FMDchat
mdulrich Michael Ulrich
my question is how many out there have fmd and are asymptomatic? #fmdchat
FMDChat FMDChat
My dream is that Mayo Clinic Rochester get an "FMD Clinic" it is so needed! We need a team of docs #MCCSM #FMDChat
mdulrich Michael Ulrich
to what extent does fmd "spread" in a patient - and what are the triggers? #fmdchat
PracticalWisdom Lisa Fields
What R classic symptoms might be missed?RT @mdulrich: my question is how many out there have fmd and are asymptomatic? #fmdchat
FMDChat FMDChat
We are about out of time- I want to thank each of you for participating in our first FMD Chat! #FMDchat
jenniferm7373 Jennifer Moreen
Good question about asymptomatic people. There are likely very many. Many of us were basically symptom free until a crisis hit. #fmdchat
mdulrich Michael Ulrich
classic symptoms depend on where FMD is. In carotids it is the "whoosh" sound with a bruit. #fmdchat
FMDChat FMDChat
Thank you so much for joining us on FMDChat. Please check back for our next FMDChat date and time! #FMDchat
FMDChat FMDChat
Questions about FMDChat can be directed to mwva@me.com #FMDchat
mdulrich Michael Ulrich
other symptoms can be secondary related to hypertension and other effects of the disease - fatigue, headaches, etc.. #fmdchat
FMDChat FMDChat
Don't Forget! Brain Aneurysm Awareness week is March 14-20, 2011 http://joeniekrofoundation.com/ #FMDchat
mdulrich Michael Ulrich
of course, fmd can lead to strokes, heart attacks. #fmdchat
PracticalWisdom Lisa Fields
Thank you so much for the information and chat tonight. How exciting to have your first FMDChat. Congrats! #fmdchat
FMDChat FMDChat
Goodnight everyone! Thank you!! #FMDchat
PracticalWisdom Lisa Fields
Good night @FMDGirl @mdulrich @Jennifer7373 http://www.youtube.com/watch?v=cp7_u0kcQRo #fmdchat
PracticalWisdom Lisa Fields
@FMDChat: Congrats on First #FMDchat. Proud U R my Friend/Teacher. http://www.youtube.com/watch?v=axLRUszuu9I
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