fibromuscular dysplasia--Anyone???

[irishrooster]

Hi all,  Well I went to the nephrologist and he thinks I have fibromuscuar dysplasia. It is a not very common disorder in females around my age but he says I have the symptoms for it.  They just have to take an ultrasound of my kidneys and if the clot is in one of my renal arteries they just go in and put a balloon in it to open it up.  If they can do that for some reason then they do angioplasty on me.  My dr. acted like it was no big deal.  I have read some stories on patients and 1/2 have no probems and another 1/2 do have problems.  Apparently you can have strokes, heart attacks and arthereosclorosis.  

My blood pressure has finally gone down---after over 6 weeks of stage 2.  My left ear is actually not ringing and it does not hurt.  My left temple and basically whole left side of my face feels like it is not even there!  It kinda scares me because my ear has been ringing for a super long time and my left side of my face has been hurting for the same amount of time.  I did not take my bp for a long time until that one time about 6 weeks ago because I just took it out of curiosity.  Maybe I have had high bp for a super long time????  I am taking a drug caled Valturna now.  It brought my bp down within 3 days!!!! I am so happy I am eating macs and cheese and drinking a coke!!!!

Anyway, if any of you guys have heard of this weird condition or have actually had it please let me know.  It always is nice to actually talk with someone who understands what you are going through. Thanks guys!!

[FMDAdvocate]

Hi,
The FMDSA has a patient registry with clinics participating all over the country. Several states & other countries have group leaders familiar with hypertension & Fibromuscular Dysplasia. There is a Forum on medHelp for Fibromuscular Dysplasia too.
Blessings to you,

[LuoHung]

Hi irish, I am 22 male years old from VietNam, sorry for my bad English, I read about this topic:
http://www.medhelp.org/posts/Kidney-Disease--Disorders/Newbie--Not-dx--have-protein-in-urine--high-bp--tests-normal--wbc-in-urine-no-infection/show/1330253
I have the same symptoms like you:itchy skins in arm, brown mottled quadicaps and legs,left abdomen bloated,lots of headaches,muscles ache,difficult sleep,dizzy

I did blood test,urine test, ultrasound: creatinin is 118umol/l(abnormal), the ultrasound showed my left kidney have water stage I(i don't know how to explain),I DO RESEARCH AND THAT SYMPTOMS IS LIKE RENAL FAILURE, so I'm very stress now, can u tell me about your blood test: creatinin??,ure??, I appreciate about that.i'm just 22, i scrared now, plz reply me Thank you so much.

[irishrooster]

Thats weird, why did the emails get blocked? Is that some kind of regular practice?  Oh well.  At least I see them now.  Thanks for your reply!  Yes, I have been rather sad today thinking about "wouldv'es" and "couldv'es".  I went to FaceBook (yes I am narcissistic---did you see the latest study that says that FB people are narcissistic?) Anyway, I saw my ex-boyfriend(we were together for 5 years from when I was 17-22 and I broke up with him for an extremely popular guy from high school had had been flirting with me.  Worst mistake of my life.  The new boyfriend beat me and the old "best thing in my life" moved on to the girl he has been married to for 15 years.  I was looking at his pix and there was a pic of them at a diner in New York on their 14th anniversary.  They got married in Central park.  Well he took me there first.  He takes her back every year on their anniversary.  People can be such fools sometimes.  I basically just let my husband control me.  He is just like my mom.  I married my mom I guess.  I cant divorce him because my kids are 11 and 13 and they freak out if the "D" word is even mentioned.  I cant do that to them because it really missed me up when my parents divorced and they are extremely sensitive just like me.  My husband is so controlling I am  basically miserable all the time and just want to go to school so I can get a job in Austin and be gone from the house all the time.  I would be home for my kids but thats about it.  Why is it that we tend to do things to make us more sad when we are already too sad to bear one ounce more of sadness?  One of those great philosophical questions I used to have so much fun discussing with my "old" friends who my husband just never liked.  All he likes to talk about is news and "glory days" meaning high school days.  Now my boys are getting older and they are both pre-ap so they are very smart and we are beginning to have wonderful conversations.  Life goes on I suppose.  At least I hope it does.

Yes, the Cleveland clinic sounds good.  I am going to ask for that duplex scan on Monday and if they find anything I will discuss with my doctor about going.  I am scared because although my bp is coming down somewhat, well actually a lot, that locust noise is still going strong in my left ear.  Also I dont think I mentioned it before but I have this weird bulge right above my left temple.  I know aneurisms are not supposed to hurt but this thing does.  I have had it for about 8 months now and I when I get a bad headache it throbs and I massage it.  It is very tender and sensitive feeling.  Plus my scalp and the back of my head are very sensitive on that side (left) and my neck hurts pretty bad most of the time.  I am such a mess.  I just want toget well and try to eek out some kind of mutually happy (hopefully) existence with my husband.  Once I am working and bringing in money I dont think he will have much to say about what I do.  Thanks so much and if you have any other info on symptoms of the carotid artery problem please let me know.  I am so impatient about things like this!~~~Tamye

[tlvdb]

emails got blocked :  admin ( at)fmdsa.org

Pam Mace: pam.mace (at) fmdsa.org

[tlvdb]

Hi Tamye,

Take a deep breath. And in my opinion tell your husband to *-off.  I know that's not possible but I know what you are going through with the pressure.  My ex-husband used to act very similarly was anti meds and I finally told him, it wasn't about him, it's about me.  And this is before I ever knew I had FMD.  Like I said, he's my ex.  

I am 38, was diagnosed with hypertension at 23 and got the run around for 14 years.  I am fortunate that I am single and have the financial resources to get to NY and Cleveland.  The Cleveland clinic would be much less expensive for you to visit since hotel costs are outrageous in NY.  Dr. Olin trained Dr. Gornick and I think the Cleveland Clinic now has an FMD clinic every other Friday.  You may however find it's quicker to get an appt in NY.  That was my experience but it was a year ago so a lot has changed since then.

Your best resource is FMDSA.org as I am only a patient and not a physician.  Pam Mace is the Director, a nurse and an FMD patient who had a heck of a time getting diagnosed after suffering strokes, etc.  Call her on Monday!!! She may even know of physicians in your area who have experience with FMD.

FMDSA
20325 Center Ridge Road
Suite 620
Rocky River, Ohio
44116

www.fmdsa.org
Phone Number: [phone]
Toll Free 888-709-7089

email: ***@****

Pam Mace: pam.***@****

[irishrooster]

Hi! Can I please call you Telvy since I live in the South and we LOVE nicknames and I would have a hard time trying to remember your initials?  Let me know since some people dont like nicknames.  I know what you mean about the "blood clot thing".  I have done research and realized I was saying it wrong.  Actually Telvy I am kinda freaked right now.  You see, I have been doing research as I mentioned and I seem to have a LOT of symptoms of the carotid form of this disorder.  This seriously scares me.  I am about to start school  in a month and my husband has already told me that he wants my medical issues straightened out before I go to school.  He does not want me stroking out in the car because the school is 50 miles round trip.  

I am wondering about your comments about the specialists you mentioned.  You fly from CA to NY to see Dr. Olin.  How often do you have to see him/her?  I do realize that airfare is not as expensive as it used to be but we have two very hungry boys ages 11 and 13 who are into all kinds of extra-curricular stuff and school in general cost a ton nowadays.  Not to mention the cost of the cafeteria food.  Jeez that ends up costing me almost $2000.00 itself every year!  Plus I usually buy them games for their game systems and clothes and new tennie shoes all the time and...well you get the picture.  Plus I have to keep up with my hair and my own stuff. My husband gripes all the time about money as it is.  It is a very serious issue with him.  BUT....I dont want to die.  I am too young.  I have to raise my kids and love my grandbabies.  I have to see Ireland before I die.  Not to sound too nosy but do you have lots of extra resources to spend on this or is this a choice because of the seriousness of it and the fact that you really have no desire to die soon either?  I mean I really need to know this because I am totally freaking out right now.  I realized it was serious but I think I just was putting it out of my mind.  The carotid thing sounded just like me, especially the "swooshing" sound in your ears?  I really do not have "ringing" in my ears.  Your from CA and I am from TX so I know you know the sound of locusts (cicadas).  That is EXACTLY what my ear sounds like.  I would definitely describe it as a "swoosing" sound.  It kinda sounds like a heartbeat in a weird way.  

Please Telvy answer me soon.  I really need to know as much as possible so my husband will say it is ok to get on a plane to New York (otherwise he would just be jealous because my ex and I went to New York often and I absolutely love it and would move there in a "New York minute".  As Billy Joel is happy to say (and me too) "I am in a New York state of mind"....Thank you my friend...Tamye  

[tlvdb]

Fibromuscular Dysplasia (FMD) has been called a "rare" disease when in fact it looks like it isn't rare at all; it just isn't looked for.  Many more people, mostly women are getting diagnosed and research is going on.  A good resource for you in FMDSA. www.fmdsa.org

You need to get DUPLEX ultrasounds of both your carotid and renal arteries.  The part you mention about the blood clot doesn't make sense.  If you have FMD in your renal arteries, you may need balloon angioplasty.  But FMD is not a blood clot.  It is an abnormal growth of the artery wall causing stenosis not allowing the blood to flow normally, therefore causing hypertension (high blood pressure).

I have FMD, was diagnosed with it in the renal arteries last year and had balloon angioplasty in Oct.  I also have a small aneurysm.  The key is for you to see a VASCULAR specialist who is familiar with FMD (not many doctors are as it is newly being found in more and more patients).

If you have the resources, I highly recommend you go and see Heather Gornick at the Cleveland clinic or Jeffrey Olin at Mount Sinai in NY.  They are the best and leading researchers in FMD.  If that's not possible be sure you get the DUPLEX ultrasounds that test the velocity of the blood flow in the arteries.  Have it for both the carotid and renal arteries as FMD appears here most commonly.  Be sure the technician is good and the equipment is not ancient.  

It sounds like you have many symptoms of possibly having FMD in the carotid arteries as well.  This is very serious as it can cause strokes, etc.  Get this checked ASAP!!!  

Here is a good article to read as well:  http://online.wsj.com/article/SB124605981966763611.html#mod%3Dtodays_us_page_one%26articleTabs%3Darticle

I fly from CA to NY to see Dr. Olin b/c he is simply the best and a wonderful person.