Fibromuscular dysplasia

Posted by jwillits8 @jwillits8, Aug 19, 2021

Hello. I’ve recently been told I have Fibromuscular dysplasia and take an aspirin daily. That’s it. I’m looking to where I can get more medical care for this. I live 5 hours from Mayo Clinic in Rochester, MN and 1 1/2 from Madison. I fainted and fell in April and downhill from there. Lost ability to walk. Am back on my feet now but use a Walker. Have been told nothing wrong with me and am having a hard time getting referrals to good medical facilities because my small rural town Drs say nothing wrong with me. I also have a colloid cyst on brain which I believe contributes to my symptoms. Just was told that seldom surgery is done to remove colloid cysts. I’ve had ongoing difficulties since April, 2021 with no answers or help. Any help out there? I’d like to get back to my normal active life.

Interested in more discussions like this? Go to the Brain & Nervous System group.

@jwillits8 Hello and welcome to Connect. Here is Mayo Clinic's information on Fibromuscular Dysplasia.
https://www.mayoclinic.org/diseases-conditions/fibromuscular-dysplasia/care-at-mayo-clinic/mac-20352152
From this link, you can also find doctors who treat this condition. I looks like they monitor for changes. Here is a quote from this page on the Mayo Clinic website.

"The most common form of fibromuscular dysplasia looks like a "string of beads" on imaging tests. Other forms of fibromuscular dysplasia have a smooth focal appearance.

Once you've been diagnosed with fibromuscular dysplasia, your doctor will follow you clinically. Occasionally, for example if you have an aneurysm, or if your symptoms change, you may need repeat imaging to monitor the arteries."

You can refer yourself for care at Mayo Clinic. You do not need to get a doctor to do that, but it can help. Have you worked with a physical therapist on balance? Was there a reason that your doctors gave for you passing out? Was that blood pressure related and have you been treated for this?

Another option for care under the Mayo umbrella is the Mayo Clinic Care Network where specialists at other hospitals are connected to specialists at Mayo Clinic and you can receive your care locally at one of these hospitals. That may be important if you need to be seen on an emergency basis and cannot travel to Mayo or wait for an appointment.

if you wish to seek care at Mayo Clinic at any of the 3 main campuses, you may use this link. http://mayocl.in/1mtmR63

This link has information where to find specialists in the Mayo Clinic Care network.
https://www.mayoclinic.org/about-mayo-clinic/care-network/members

REPLY
@jenniferhunter

@jwillits8 Hello and welcome to Connect. Here is Mayo Clinic's information on Fibromuscular Dysplasia.
https://www.mayoclinic.org/diseases-conditions/fibromuscular-dysplasia/care-at-mayo-clinic/mac-20352152
From this link, you can also find doctors who treat this condition. I looks like they monitor for changes. Here is a quote from this page on the Mayo Clinic website.

"The most common form of fibromuscular dysplasia looks like a "string of beads" on imaging tests. Other forms of fibromuscular dysplasia have a smooth focal appearance.

Once you've been diagnosed with fibromuscular dysplasia, your doctor will follow you clinically. Occasionally, for example if you have an aneurysm, or if your symptoms change, you may need repeat imaging to monitor the arteries."

You can refer yourself for care at Mayo Clinic. You do not need to get a doctor to do that, but it can help. Have you worked with a physical therapist on balance? Was there a reason that your doctors gave for you passing out? Was that blood pressure related and have you been treated for this?

Another option for care under the Mayo umbrella is the Mayo Clinic Care Network where specialists at other hospitals are connected to specialists at Mayo Clinic and you can receive your care locally at one of these hospitals. That may be important if you need to be seen on an emergency basis and cannot travel to Mayo or wait for an appointment.

if you wish to seek care at Mayo Clinic at any of the 3 main campuses, you may use this link. http://mayocl.in/1mtmR63

This link has information where to find specialists in the Mayo Clinic Care network.
https://www.mayoclinic.org/about-mayo-clinic/care-network/members

Jump to this post

I did not get an answer to why I fainted. I have received physical therapy four times. Doctors took me off blood pressure pills in April due to a positive tilt table test. I recently got back on blood pressure med. I don’t seem to be getting my strength and endurance back.
Fibromuscular dysplasia showed up on a neck angiogram. a neurologist ordered. He will refer me to Madison.

REPLY
Please sign in or register to post a reply.
  Request Appointment