Thank you for sharing this interesting story @kariulrich FMD is a frightening disease. The fear of not knowing if or when an artery will dissect can cause anxiety and depression. Support groups are very helpful when you discover others with the same rare disease understand you.
Can you tell us a little bit more specific about this. When I google something medical, the symptoms seem to be always the same, and one feels, one is experiencing it.
,
Hi Kari,
I'm doing well, thanks for asking. I had a check up in April with Dr. Houghton and had a CTA and an MRA to check my carotids, renals and mesenteric arteries as those are the ones that are affected by my FMD. I take 5 mg Lisinopril and a baby aspirin every day so I am one of the very, very lucky ones. I received a letter about being included in the Registry from Dr. Shields, so I take that as positive. When I was there in April I did complain to Dr. Houghton that Mayo was not part of the Registry and pointed out that their competition was included in the the Registry so I thought Mayo should be more proactive there. He said he would talk to Dr. Shields, so maybe that is partly why Dr. Shields sent out these letters to the FMD patients. Who knows? Anyway, all is well and I hope it stays that way! How are you doing??
Hi Kari,
I'm doing well, thanks for asking. I had a check up in April with Dr. Houghton and had a CTA and an MRA to check my carotids, renals and mesenteric arteries as those are the ones that are affected by my FMD. I take 5 mg Lisinopril and a baby aspirin every day so I am one of the very, very lucky ones. I received a letter about being included in the Registry from Dr. Shields, so I take that as positive. When I was there in April I did complain to Dr. Houghton that Mayo was not part of the Registry and pointed out that their competition was included in the the Registry so I thought Mayo should be more proactive there. He said he would talk to Dr. Shields, so maybe that is partly why Dr. Shields sent out these letters to the FMD patients. Who knows? Anyway, all is well and I hope it stays that way! How are you doing??
Awesome news about being included in the registry. Mayo was part of the patient registry, for many years. I am sure there is a valid reason they opted out. I am doing ok.... gearing up for my yearly MRI/MRA this fall. Seems each time they find something new, so it always makes me a bit anxious. Last time they found a AVM that I had not had in any previous MRI/MRA's. I have not researched FMD and AVM's much.
I am 57yr old and just got out if the hospital with my 5th stroke in as many years. They finally did a brain angiogram. They have discovered I have FMD. And also a very aggressive migraine disorder. I suffer daily from migraines, yes I said daily, also vertigo multiple TIA's. My first cousin also has it. Anyone else have something close?
Hi Melanie,
Daily migraines I cannot begin to imagine how awful that must be. I have heard other FMD patients say they benefitted from Botox injections for migraines. I think the injections are done in the pain management department. I had my first stroke and was diagnosed with FMD at 48. I have a great aunt that had a cerebral aneurysm but she was not officially diagnosed with FMD. I have met others with family members that have been diagnosed. Best to you.
Hi Melanie,
Daily migraines I cannot begin to imagine how awful that must be. I have heard other FMD patients say they benefitted from Botox injections for migraines. I think the injections are done in the pain management department. I had my first stroke and was diagnosed with FMD at 48. I have a great aunt that had a cerebral aneurysm but she was not officially diagnosed with FMD. I have met others with family members that have been diagnosed. Best to you.
@fmdadvocate I have a history of cluster headaches, I also get headaches daily. I tried botox from a local nurse here that does it and NO HEADACHES! This was not through my insurance or anything so it was expensive. Has anyone else tried it?
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.
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.
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
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
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.
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Can you tell us a little bit more specific about this. When I google something medical, the symptoms seem to be always the same, and one feels, one is experiencing it.
,
For those of you with FMD, how are you doing? Any new news?
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1 ReactionHi Kari,
I'm doing well, thanks for asking. I had a check up in April with Dr. Houghton and had a CTA and an MRA to check my carotids, renals and mesenteric arteries as those are the ones that are affected by my FMD. I take 5 mg Lisinopril and a baby aspirin every day so I am one of the very, very lucky ones. I received a letter about being included in the Registry from Dr. Shields, so I take that as positive. When I was there in April I did complain to Dr. Houghton that Mayo was not part of the Registry and pointed out that their competition was included in the the Registry so I thought Mayo should be more proactive there. He said he would talk to Dr. Shields, so maybe that is partly why Dr. Shields sent out these letters to the FMD patients. Who knows? Anyway, all is well and I hope it stays that way! How are you doing??
-
Like -
Helpful -
Hug
2 ReactionsAwesome news about being included in the registry. Mayo was part of the patient registry, for many years. I am sure there is a valid reason they opted out. I am doing ok.... gearing up for my yearly MRI/MRA this fall. Seems each time they find something new, so it always makes me a bit anxious. Last time they found a AVM that I had not had in any previous MRI/MRA's. I have not researched FMD and AVM's much.
Hi Melanie,
Daily migraines I cannot begin to imagine how awful that must be. I have heard other FMD patients say they benefitted from Botox injections for migraines. I think the injections are done in the pain management department. I had my first stroke and was diagnosed with FMD at 48. I have a great aunt that had a cerebral aneurysm but she was not officially diagnosed with FMD. I have met others with family members that have been diagnosed. Best to you.
-
Like -
Helpful -
Hug
2 Reactions@fmdadvocate I have a history of cluster headaches, I also get headaches daily. I tried botox from a local nurse here that does it and NO HEADACHES! This was not through my insurance or anything so it was expensive. Has anyone else tried it?
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.
@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
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Helpful -
Hug
2 ReactionsI 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.