1. < Stroke & Cerebrovascular Diseases

Fibromuscular dysplasia (FMD): What are next steps?

Posted by lpyne @lpyne, May 17 10:06am

I have had 2 neck CT scans and both found MFD- my neurologist states it’s nothing to worry about. In the mean time I have suffered from chronic dizziness, headaches, anxiety symptoms, ringing ears. I have seen a cardiologist, neuro vascular specialist and had a wide variety of tests that all seem normal- except the neck CT. No MFD in renal artery. Curious if I should ignore it like my doctor is telling me or if I should seek a second opinion?

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lpyne | @lpyne | May 21 6:46am
In reply to @parrot53 "I was told the same thing. I have carotid artery FMD with no renal artery problems...." + (show)
@parrot53

I was told the same thing. I have carotid artery FMD with no renal artery problems. I take a daily 81 mg aspirin to thin the blood to prevent stroke and have been told, after one annual checkup to make sure carotid arteries were stable, that 2 years would be my next follow up visit with the neurologist. I do have persistent ringing in my ears, neck pain sometimes, and lightening like headaches. No balance or dizziness though. The aspirin helps my headaches. Wishing you the best. Please keep us posted if you get any more information.

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Mine is in the same place. And no renal artery issues. It’s so interesting to me that they tell you to be cautious and don’t manipulate the neck at all and yet it’s nothing serious enough to treat. Unfortunately I’m allergic to aspirin so I can’t take that. They put me on a BP medication but I don’t have high BP so that causes even more dizziness. Needless to say I stopped taking that. They tried to tell me the dizziness was silent migraine- but I find it hard to believe it’s a migraine that doesn’t ever go away. Chronic dizziness, ringing ears and neck pain right at the artery. It’s a very frustrating experience to say the least.
I’m seeking second opinions but I’m not hopeful the answers will change. Trying my best to get back into physical and emotional shape. Prayers for you and me! Trust me if I find any answers I will share.

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1 reply
lpyne | @lpyne | May 21 7:12am
In reply to @parrot53 "I was told the same thing. I have carotid artery FMD with no renal artery problems...." + (show)
@parrot53

I was told the same thing. I have carotid artery FMD with no renal artery problems. I take a daily 81 mg aspirin to thin the blood to prevent stroke and have been told, after one annual checkup to make sure carotid arteries were stable, that 2 years would be my next follow up visit with the neurologist. I do have persistent ringing in my ears, neck pain sometimes, and lightening like headaches. No balance or dizziness though. The aspirin helps my headaches. Wishing you the best. Please keep us posted if you get any more information.

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Also curious if you have any additional issues when you attempt exercise?

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2 replies
bettyg81pain | @bettyg81pain | May 21 4:11pm
In reply to @lpyne "Curious if you have ever had a nerve study done? I work for a PT that..." + (show)
@lpyne

Curious if you have ever had a nerve study done? I work for a PT that is a spine specialist and we have seen these studies to be helpful. Even if your Doctor tells you otherwise…. 🙂 maybe I could send you a book written by him that may have a few nuggets of good info..?

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That is so interesting-I just posted something about an EMG that my neurologist has scheduled. I've been dealing with neuropathy for several years-seen several doctors and she is the first one that has recommended that I have it done. I'm assuming that will give the information on maybe help with the relief? I would be very interested in reading what your spine specialist has to say.

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parrot53 | @parrot53 | May 22 7:56am
In reply to @lpyne "Also curious if you have any additional issues when you attempt exercise?" + (show)
@lpyne

Also curious if you have any additional issues when you attempt exercise?

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I also have cirrhosis and degenerative disc disease. I get quite tired but walking and light yoga work for me. I just need to be more consistent with it. I have nerve issues with my left foot and will see a pain specialist for an EMG test soon. I use gabapentin when I really can’t sleep through the leg and foot pain but I would rather see a PT.
My neurologist told me the same thing about craning my neck. It scared me a little. I used to do that when driving all the time.
Thanks for sharing.

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parrot53 | @parrot53 | May 22 7:59am
In reply to @lpyne "Also curious if you have any additional issues when you attempt exercise?" + (show)
@lpyne

Also curious if you have any additional issues when you attempt exercise?

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I forgot to say, sorry that you can’t take the aspirin. That really helps with the headaches. I also take a beta blocker due to portal hypertension. I am lucky that I do not suffer from dizziness. Hoping you can find an answer for that.

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Moderator
Colleen Young, Connect Director | @colleenyoung | May 27 2:55pm

@lpyne, I moved your post to the Stroke & Cerbrovascular support group and the Heart & Blood Health support group. I'm also tagging fellow members like @stpaulpoet52 @queenkeb @geechiegal @jwillits8 @jayhawk57 who have experience with fibromuscular dysplasia (FMD).

If you would like to seek a second opinion at Mayo Clinic, you can submit a request here: http://mayocl.in/1mtmR63

@lpyne, how are you managing your dizziness and headaches?

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1 reply
parrot53 | @parrot53 | May 28 5:03am
In reply to @lpyne "Mine is in the same place. And no renal artery issues. It’s so interesting to me..." + (show)
@lpyne

Mine is in the same place. And no renal artery issues. It’s so interesting to me that they tell you to be cautious and don’t manipulate the neck at all and yet it’s nothing serious enough to treat. Unfortunately I’m allergic to aspirin so I can’t take that. They put me on a BP medication but I don’t have high BP so that causes even more dizziness. Needless to say I stopped taking that. They tried to tell me the dizziness was silent migraine- but I find it hard to believe it’s a migraine that doesn’t ever go away. Chronic dizziness, ringing ears and neck pain right at the artery. It’s a very frustrating experience to say the least.
I’m seeking second opinions but I’m not hopeful the answers will change. Trying my best to get back into physical and emotional shape. Prayers for you and me! Trust me if I find any answers I will share.

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I have been thinking about you. It occurred to me that fish oil or flaxseed oil tablets also thin your blood. Perhaps you could ask your doctor if one or the other might be a good substitute for aspirin since you are allergic to it.

REPLY
lpyne | @lpyne | May 28 8:13pm
In reply to @colleenyoung "@lpyne, I moved your post to the Stroke & Cerbrovascular support group and the Heart &..." + (show)
@colleenyoung

@lpyne, I moved your post to the Stroke & Cerbrovascular support group and the Heart & Blood Health support group. I'm also tagging fellow members like @stpaulpoet52 @queenkeb @geechiegal @jwillits8 @jayhawk57 who have experience with fibromuscular dysplasia (FMD).

If you would like to seek a second opinion at Mayo Clinic, you can submit a request here: http://mayocl.in/1mtmR63

@lpyne, how are you managing your dizziness and headaches?

Jump to this post

Thank you- I thought I posted on the wrong one but then couldn’t remove it

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