Fibromuscular dysplasia (FMD): What are next steps?

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.

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

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.

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.

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.

@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?

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.

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

I was told I have FMD-fibromuscular dysplasia- in the renal arteries maybe 5 yrs ago, pearl-like arteries, but no symptoms with that really. More concerned about the aortic aneurysm and brain aneurysm and just tortuous arteries. Aortic is 4.4 and possibly surgery would be 'considered' at 4.5 due to FTAAD Connective Tissue (LOX Gene Defect discovered, also) Just work at keeping blood pressure down and scans every 6 months.