Fibromuscular dysplasia (FMD): Want to connect

Posted by lpyne @lpyne, May 17, 2024

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?

Interested in more discussions like this? Go to the Heart & Blood Health Support Group.

Profile picture for lpyne @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..?

Jump to this post

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.

REPLY
Profile picture for lpyne @lpyne

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

Jump to this post

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.

REPLY
Profile picture for lpyne @lpyne

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

Jump to this post

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.

REPLY
Profile picture for heysp22 @heysp22

FIBROMUSCULAR DYSPLASIA My legs are just hurting all the time. Any ideas ? This new for the past year just on water pills, Entresto . My legs are alway leaking. What more can I do?

Jump to this post

I just found out that I have fibromuscular dysplasia also. I now have 3 aneurysms two in my head and one in my lower heart. https://www.inspire.com/groups/fibromuscular-dysplasia-society-of-america/discussion/severe-leg-pain-with-fmd/ Try this might help

REPLY
Profile picture for heysp22 @heysp22

FIBROMUSCULAR DYSPLASIA My legs are just hurting all the time. Any ideas ? This new for the past year just on water pills, Entresto . My legs are alway leaking. What more can I do?

Jump to this post

fibromuscular dysplasia

REPLY

@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?

REPLY
Profile picture for lpyne @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.

Jump to this post

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
Profile picture for marie1956 @marie1956

fibromuscular dysplasia

Jump to this post

Hello @marie1956, you commented on fibromuscular dysplasia, have you been diagnosed with this? Do you also struggle with leg pain as a result?

I'd like to invite @parrot53, @lpyne, @stpaulpoet52 @queenkeb @geechiegal @jwillits8 @jayhawk57 all have talked about fibromuscular dysplasia as well and may have some experiences to share with you as well.

REPLY
Profile picture for Justin McClanahan, Moderator @JustinMcClanahan

Hello @marie1956, you commented on fibromuscular dysplasia, have you been diagnosed with this? Do you also struggle with leg pain as a result?

I'd like to invite @parrot53, @lpyne, @stpaulpoet52 @queenkeb @geechiegal @jwillits8 @jayhawk57 all have talked about fibromuscular dysplasia as well and may have some experiences to share with you as well.

Jump to this post

@JustinMcClanahan

I have Fibromuscular dysplasia affecting mainly my neck veins. I have not had any symptoms for a long time. I take a low dose aspirin daily per Madison WI specialist. I have also had scans to check my other main veins and all is good. I do not have leg or other pain.

REPLY
Profile picture for Colleen Young, Connect Director @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

REPLY
Please sign in or register to post a reply.