I am 28 years old and had a stroke in October 2007, almost to the day five months later I had another stroke. First my right carodid artery dissected them my left. I just found out at the beginning of March 2008 that I have FMD. I was a full time college student, and I have two very active kids. I had to withdraw from school twice and now I’m just sitting around. My doctor told me to apply for social security and to take it easy. I’ve never been one to sit around. I’m feeling very useless. Since I really don’t know what to expect should I continue going to school and get a job, or should I expect to have strokes all the time? Every time I start feeling a little strange I worry!! Can I live a normal life?
I also have a history of UTI’s should I worry that FMD in my renal area also?
We can not outguess your Dr. He has seen you and knows your limitations. If there is a chance that he might be wrong- well I have had several Drs who were wrong. Do you had side effects from the strokes? I would like to know what meds you are taking. Where they started before the second stroke? I had my right carotid artery dissect about 8 yrs ago. It has healed and I have regrown blood flow around the dissection. My blood flow there is great now. Being scared is normal. I did that for a while too. But I do not feel that way any more. If you feel capable then start slowly to return to normal. Ask your Dr why there are limitations. I do believe you should have your renal arteries checked. I did and I have a severe turn in one that has some FMD beads in it. They are going to keep that kidney measured and recheck my renin levels often. If you will give us more info then we will try to help. Just remember that we are not Drs and we can only give advice because we have it too. We can tell you what we did and hope it helps. I would strongly suggest that you ask for copies of your medical records. There is much info in there that you may not be aware of. We can help with the vocabulary and you can use an online medical dictionary too. I started healing and feeling better when I was put on the right meds. Many of us take the same medications.
----- Original Message -----
From: “laura2916” fmd-cpt8324@lists.careplace.com
To: dbuck5@embarqmail.com
Sent: Monday, March 31, 2008 4:52:46 PM (GMT-0500) America/New_York
Subject: [fmd] What’s next??
I was on cumidian from October to March then they put me on an 81 mg asprin daily. That all. I was told that asprin will do the same thing as the cumidian. That was fine with me because i could never get my levels right they were always low. I do have an appointment with a vascular doctor this week. My PCP set it up, neither of them have ever seen FMD. I will call about getting my record though I never thought about getting them. I’m glad I found this site you have made me feel a little better.
I was on coumadin for 9 months. I formed a blood clot after my dissection. After 9 months- my liver tests were off. I went on PLavix for a while then switched to aspirin. Cozaar does a great job on my blood pressure. I then started feeling very anxious and moody like PMS. I had a fast heart rate. I was given TOprol and it all calmed down. My rings quit fitting so I was given a diuretic. After these meds- I have had no problems. Nothing has worsened. I would love to talk to you. I have a very full and active life. If you would like to talk- just ask and I will send my number. I see specialist every year to monitor and all is well. I have learned to research for myself. The group keeps me informed and I use the info to watch out for myself. I know kidney stuff from MIMI and stroke stuff from Ruthie, heart stuff from Betje, etc. We know more about our individual areas than any one Dr in our local towns. FMDSA has assembled experts on their board, and are working to unite updated medical info. We are really advancing.
----- Original Message -----
From: “laura2916” fmd-cpt8324@lists.careplace.com
To: dbuck5@embarqmail.com
Sent: Monday, March 31, 2008 9:05:29 PM (GMT-0500) America/New_York
Subject: Re: [fmd] What’s next??
Laura - I would see some one with experience with FMD - it is worth the trip - I take a 2 1/2 hr train ride for expertise and am thankful - I would waste half a day locally at any other MD office -
I have aslo slowly collected a bunch of local MD’s who have treated FMD - but few who have followed people like us over time and know our prognosis based on experience with others. Keep in mind - world wide there are only 100 people as members of this FMD site - so there must be few MD’s who treat us.
Best wishes and keep stong and postitive!
karen
Hi Laura, yes please have your renals checked! Sometimes people dissect their carotids because there b/p went high…high b/p is usally caused in our case by stenosed renal artereis. Also have you checked out FMDSA.ORG?
oxoxoxmimi
Hi everyone! I just wanted to thank everyone who replied. I did see a vascular Dr. yesterday who is familiar with FMD. He also just out of coincidence is friends with my neurologist. (Who I see next week.) He worried about my renal area. I do not have high blood pressure I have extremely low blood pressure 80/40 sometimes lower. Dr joke and ask me how i’m able to walk around. My blood pressure is alot less on the left side of body so he was a bit concerened. So I have to have a MRI of my entire body!!! I also have to stay on my Asprin for maintainence. If they find antyhing in my renal area then he wants to put me on Plavix?? (I think that is what he said I have a very bad memory.) I’m feeling a little bet about things. He said I’m too young to not continue with school and living but I do have to take it easy. He also does not think that I have EDS but can be sure till the MRI. I will be seeing him again in a month. Thanks again everyone this group really makes me feel better. I thought I was alone and now I see that I am not!!! 
FMD in the subclavian area can cause a difference in BP from arm to arm. I have a big difference too. Dr Naz believes it is related to my Marfan overlay. I have never heard of EDS showing on a scan. Dr Naz goes by symptoms. Please ask what he is looking for. On my renal area- it shows a severe bend. I believe MIMI has a bend too. They also need to measure the size of both Kidneys. If one is affected then it will shrink smaller.
----- Original Message -----
From: “laura2916” fmd-cpt8324@lists.careplace.com
To: dbuck5@embarqmail.com
Sent: Thursday, April 3, 2008 8:14:15 PM (GMT-0500) America/New_York
Subject: Re: [fmd] What’s next??
Is having an ultrasound of the kidneys and aorta sufficent for finding FMD in the kindneys? I do not have high blood pressure , I have FMD of the carotids.
In response to AID’s question - the renal US is only as accurate as the skill and experience of the technician doing it and the physician reading it. The skill of the technician is most important- I found misdiagnosis, mis-reading and poor technical skill in almost every diagnostic test done on me- resulting in not detecting FMD. If you really think your renals are invovlved you may ask for further imaging and blood test that look at your “plasma renin activity PRA”. Also I’d suggest to take your BP in several postions, in different times of the day. I had renal artery stenosis on both sides with “labile” HTN. There fore in my past the med-techs at the dr. office would take my BP - find it high, then assume it was a false reading, then re-take it and it would be normal. they would only write down the normal reading.
I hope this helps