Hi, my name is Carol and I have bilateral FMD of the renal arteries with Stage 3 of CKD. I am interested in learning about new ways of treating this condition and what has helped others with the same condition.
Hi My name is Lorraine I live in Juoiter Florida. I was diagnosed with FMD of both Carotid atreries . Last November 2006 my left carotid dissected . Was told during angiogram that artery was99% occluded.That started this “journey” of trying to find info on FMD and help.Still trying to find specialist. Primary and neuro here both said need to find Dr.with experience in FMD. So…I’m tring. Glad that I found this group
my beautiful, talented, brilliant 27 year old daughter has ben diagnosed with FMD. In the past 7 months she has had 22 arteries angioplastied. Sh e has been affected in the carotid and renal arteries, arteries leading to the liver and spleen, and tests this week will tell whether or not her arms are also affected. No one listened to her complaints about high blood pressure until she had a stroke in November. She is married and in Colorado while I am back home in Georgia. I just hope that what I can learn on this message board helps me understand more than the scientific research articles do. I want to know how real people have been affected in their everyday lives.
Hi Carol, I also have bilateral FMD of the renals, except just had a neprectomy so technically guess I am no longer bilateral? Hmmm. Just a solo gal I guess. Also fmd in carotids. Remaining kidney has stage 3ckd. So my question is how do your labs look? Mine are pretty good considering. How is your b/p?
Take care…Mimi
My father died of a stroke related to FMD, and my blood pressure has recently gone up significantly, so they are about to start testing me as well.
I’ve also beat Hodgkins disease and endometriosis in the past.
Hi THere, My name is Mimi. I don’t visit this site much as for an old fart like me it is to difficult to navigate. But I do have some great friends here. They all send me hugs! Of course I haven’t figured out the hugs deal on this site …but I hug em all back in my heart! Usually I am on the yahoo site, as I have been there for about seven years and this old dog gets it. But I like to pop in and say hi, ccause some great folks here…and who knows one day I may learn how to use this.
Now, I did not read how old you are? Also while I know this is a scarey time, there is a positive here. You have docs who are being proactive! That is HUGE in the treatment of FMD. Some docs have been known to let hypertension go on for years (me about 24 years) before they start looking via arteriogram at kidneys etc! Long term uncontrolled b/p is a nasty bugger to all your vital organs…so I am glad you have such proactive docs!
You might already know of, but make sure to check out FMDSA.ORG
There is a lot of great articles there, and you will find the most up to date info.
Take care…oxoxmimi
FMD Renals/Carotid/probably vetebral
Hi, I am new to FMD and was looking for others with the condition who can relate to my experiences. I am a happily married 40 year old mother of two little girls, ages 4 and 6. I was diagnosed with FMD in June 2007 after my neurologist heard a bruit in my carotids and sent me for a cardio consult. The ultrasounds showed 60-80% blockage both arteries and I was sent to a vascular surgeon who is now monitoring my condition. I have suffered with headaches my entire life, but only started having migraines after the birth of my second child. Now I get them weekly. I have been hearing my pulse in me left ear for several years and was told by a few doctors that it is not unusual. Sometimes I get dizzy spells, or feel like the room is wavering, lately I have been really tired and can’t seem to get enough sleep.
My parents both had ultrasounds done after my diagnosis and luckily they are fine. I am worried that my kids may have this condition and need to keep an eye on their blood pressure as they get older.
My biggest fear is that I will have a stroke and become incapacitated and not be able to work (I am the insurance provider for the family) and that they either will not be able to take care of me or won’t be able to afford care.
I look forward to being part of this group and sharing experiences with you all.
What meds are you taking? What state do you live in? Do your Drs seem to know alot about FMD? My Drs do not know a lot so I made a plan for myself using the info from this group. I made appointments to look in other areas of my body. Haveve you had a MRI or CT to check for brain aneurysms? I had 2 brain aneurysms rupture and they did brain surgery to fix it. That is when they found my caratid FMD. That was 8 yrs ago. I have it in my mesenteric and renals but I have no symptoms yet. I am now 50 with young children and I get along pretty good.
Hi Melva,
It sounds like you have been through a lot. Do your kids know about your disease? I haven’t told my kids anything yet.
I am lucky, I live in Cleveland Ohio and see the drs. at Cleveland Clinic. I see Dr. Bazjer. Pam Mace from FMSDA recommended that I talk with Dr. Heather Gornick as well, she specializes in FMD. I still need to make an appointment with her.
I am only on 81mg of aspirin daily for blood thinning and I take Maxalt for the migraines. My vascular surgeon is very knowledgable about FMD and gave me a lot of information during our first visit, I was in his office for two hours while he explained the disease, what I needed to watch out for, what to tell my husband to watch out for and how I needed to have my kids checked when they approached the age of 20. He explained that the current belief is that collagen is the culprit for the abnormal growth of the arterial walls. He did ultrasounds of the carotids, kidneys and legs, but did not think an MRA was necessary at this point becuase I don’t have too many symptoms. I get blood work twice a year and see him twice a year along with my physician. I may push him to do an MRA, but I am hoping to take part in the NIH study so I don’t want to go through that twice if I don’t have to.
I went to see a second vascular surgeon after my initial diagnosis to get a second opinion and he did not even know what FMD was. He kept saying that someone my age should not have this problem and I told him it is a rare disease involving abnormal growth of the arterial walls. He had no clue about FMD, but did not recommend surgery either.
I tend to get stressed out easily and am trying to change that, but is very difficult. Living with FMD and knowing that something could happen to me at any time is adding stress to my life. I think I am still trying to cope with all of this but at the same time not allow it to consume me. However, it doesn’t stop me from doing everything I did before (except taking on more responsibility at work). While my kids don’t know about my disease, I have made sure that both kids know how to dial 911 and when to dial 911 and what to say.
It’s good to know that there are others out there with whom I can communicate and gather information. I try to talk with my husband, but sometimes I feel like he thinks I am making a big deal out of nothing. He is very supportive and I know he is trying to make me appreciate life and move on with it.
My family found me unconscious so I could not hide the problem. I was the first FMD patient in the study. Dr Naz knows what to check. She is awesome. I also had anxiety problems but when I was put on Toprol for mitral valve issues-- the anxiety dissappeared. I believe it was due to a faster than normal heart rate. There are stages after the diagnosis. There is denial, anger and then acceptance. I do not live in fear. I have learned more than most Drs about FMD and take care of myself. The knowledge makes the fear go away. I am now the caretaker for a 91 yr old mom with a stroke and a husband with cancer. I am the healthy one!!! Most people after the BP meds and Toprol actually go long periods with little problems. I have met Pam Mace and Susan. They are really good people. I live a very normal life. Please ask any questions and I will try to help.
Hi realtygal,
I understand where you are with this disease. I was 27 years old when I was diagnosed with 3 small children. I am now 58 yrs old and I had surgery on the right renal artery when I was first diagnosed with FMD. That was a long time ago and I had a wonderful doctor then. Now I take b/p meds and beta blocker and calcium blocker. I am doing great. I have had mra which are better than a mri. I was told in 2005 I had a 40 to 50 percent blockage in the aorta going into the left renal artery but now I have had another mra in 2007 and there is “NO” blockage there. I do not know why for sure but I do have my thoughts about that. As for as I know I do not have any other blockages. I guess having this fmd for so long I have learned to “not” worry about it. When I was raising my children I was very concerned as you are and a lot a ladies I read their posts but Now I do not have a concern to much. I have learned to give my worries and concerns over to a higher being and leave it
there. That’s "MY " way.
Now as for my children. They are all grown and I have 1 son and 2 daughters and they all have children of there on. They are all aware of this disease and what they should pay attention to in their health and their children’s. My youngest daughter is a nurse now so she has really researched this and understands more than the other two children.
Now let me ask you and others on this site a questions. Do any of you have dry skin? I have had dry skin all my life to the point of eczema. Just wondering also do any of you have allergies? No matter what you are allergic to.
Keep a positive attitude the best you can and take Co Enzyme Q10. This helps with the walls of the arteries t okeep the walls stronger.
Have a blessed and HAPPY VALENTINE’S DAY!
realtygal fmd-cpt2262@lists.careplace.com wrote:
Hi Momma D,
Thanks for the words of encouragement. It sounds like we could all learn a lot from you. I used to take CoQ10, I’ll start with that again. That is great advice. Have you modified your eating habits and exercise levels over time? I was told to walk at least 30 minutes 3-4 times a week, this should help increase my HDL level which is a little low. But working full-time with two small kids that need help with homework and such, finding the time has been challenging, but we go to the mall often and walk around there and I try to take the long way to my office building, so it’s better than nothing.
I recently began having dry skin, mainly in the winter. I have had an eczema like condition on my eyelids for years and I haven’t been able to figure out what triggers it. I had the patch test done and found out that I am highly allergic to thimerosol (mercury preservative in vaccines, cosmetics and contact lens solution) and balsam of peru which is ofund in many perfumes and creams.
I also think I have Reynaud’s Syndrome (self-diagnosis). Two fingers on my right hand go numb when they get cold, they turn white and when circulaiton starts up again, they burn like crazy and it is painful. I haven’t menitoned it to the doctors, I keep forgetting about it, but I wonder if it could be related to FMD. From what I have read, this is a secondary symptom to somethign else, one of the diseases was atherosclerosis.
Currently, I am not overweight (never have been), do not have high blood pressure (excpet during labor in my last pregnancy), do not have high cholesterol, do not smoke and do not drink, so the my dr. is a little puzzled by this. He also wants me to ensure that it stays this way and that the cholesterol doesn’t go up and I have to keep an eye on the blood pressure regularly in case it starts to go up.
I have changed my attitude about many things after being diagnosed. I am no longer interested in climbing the career ladder and am looking for less responsibility at work. While that has been one of the most difficult things to accept, I remind myself that I don’t need the stress and I need to spend the time with my family, that is much more important that career advancement.
I am also spiritual and firmly believe that God does not give you anything that you cannot handle.
Take care and have a happy Valentine’s Day.
hi realtygal,
I was “told” way back in the later 70’s not to eat pork, prepared meats ( lunchmeats, can meats, soups, anything that has aleady been cooked and canned.) Also cheeses, milk, any spices that are salts or powders and seasoning ot anything that has MSG in it. (monosodium glutemate). Eating out to much is bad. it is really interesting things you look for to eat, lol!! It is hard to find food to eat at times. I use to be very athletic when I was in my 30’s and early 40’s but now my joints are hurting and feel like they are going to give out on me… I was a really bad tomboy when I was a little girl and all the way thru to about late 40’s. My weight is to much it is really hard to get off when I can’t do alot of physical things… I do work now because my husband had lower back surgery about 1 1/2 yrs ago and had fusions and can’t work anymore. I started my on business pilot/escort of oversized loads. I love this job. My husband goes with me and we have done alot
of driving all over the USA. I love it. Not good for the lower legs but oh well!!! I was told that I have the beginnings of atherosclerosis. I do not drink anything that has acoholol in it, use to smoke but have quit over 10years ago. I do not have high cholesterol or Triglycerides, Really very good blood work. I had some test about 2 weeks ago just for on my own. I have not received the results yet. Reynaulds Is a very miserable thing. I have a friend that has it and she does the same thing. It is painful she says. I have the opposite problem. I get extremely hot.I think it is called “HOT FLASHES”… I do ot know what is worse to cold or to hot.
The skin thing and the allergies is probably something we all have in common. I get so dry that my skin spilts and sometimes start itching so bad and it is miserable. I do drink alot of water. and that is good for the skin. .
I to am a spiritual person. I believe in Jesus has my Saviour. I know that my God supplies all me needs, and will take care of this medical porblem I have and have had. God has taken care of me so many times thru this and He will continue taking care of me “If I let him” He is not ready to take me home yet!!! 
I have had problems with dizzyness all my life. I was always told it was the inner ear and menearse disease. But I think I have been healed of that problem… hooray!!!
I will continue to be in prayer for you…
Agape Love,
Momma "D"
realtygal fmd-cpt2262@lists.careplace.com wrote:
Hello All!
I just wanted to take a moment to introduce myself. My name is Rochelle and I live in Ontario. I’ve recently been diagnosed with FMD (having angioplasty next week) and am happy to have found this forum thanks to Kari who is a truly fabulous ambassador for the FMDSA. I look forward to getting to know more of you. I’m planning on attending the conference in Ohio in June, so hopefully I’ll meet many of you in person then.
My name is Karen and i am 41 years old diagnosed recently with FMD with renal and cerebral arteries invovled. I am interested in learning more about this disease and how to live with it and prevent the most serious complications. I also owe thanks to Pam and Kari of FMDSA.org - without them I would not have figured this out.
Hi All,
Let’s celebrate our independence from FMD! It does not define
us…just makes us that more determined to live a long and
productive life! We are after all a group of Fine Mighty and Dynamic
Souls (FMD’ERS)!
So let’s get productive! FMDSA is working hard to fund the registry
at the University of Michigan. This will enable docs to study FMD
and Find the answers we need to help our future generations. But
this is a costly undertaking, funded by donations. So how about
donating to FMDSA ? I know there are quite a few folks who read this
site but don’t post. I also have a rough idea how many do post. So
together we could raise a good amount of change to help support our
future, and our future generations quaility of life. We can also
contact our family members and ask them to donate. Every little bit
counts!
Last time I asked my Yahoo & Care Place friends to donate…well heck we had
a nice donation going! Let’s do it again!!! I have said it
before and I will say it again…if we can’t donate $25.oo to
work on finding answers…how the heck to we expect the medical
community and others to donate time and money???
I am signing off now to go the the FMDSA.ORG site and donate my
$25.00! It is so easy and secure!
As of today…Thursday…we have raised $130.o0!
Yee-hah. But lets get crackin!
oxoxoxomimi
I was diagnosed with FMD, Renals eight weeks ago and currently waiting for Angiogram to see how far this disease has gone. Have had extreme hypertension for four years before investigatins led to FMD being diagnosed. Doctors in Queensland Australia have told me very little about what to expect in the future only that I will have to be monitored closely for the rest of my life. So nice to make contact with other people with this disease as no one I know has ever heard of it, myself included.