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Fibromuscular dysplasia (FMD): Want to connect
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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Yes chronic neck pain and TMJ diagnosed 10 years prior to my FMD. Headache is the #1 common FMD symptom.
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1 ReactionWe take low-dose aspirin because we have a high risk of stroke with both blood clots in the brain and carotid arteries and other places due to our curved vessels that become narrow-dilated-narrow-dilated and the vessel walls risk getting "cracks" that cause bleeding and are called a pearl necklace appearance on X-rays because it repeats itself along our large blood vessels - the arteries - in different lengths.
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1 ReactionWe can live a long time with this disease that cannot be cured but only treated-operated when something happens urgently. The medicine we need is to keep our blood fats low and baby aspirin.
My FMD was discovered last year after acute rotational vertigo with vomiting when I became unsteady and all my symptoms I had then I still have today. It is in the brain and both carotid arteries, nothing else has been investigated.
I have numbness in my lower legs and forearms and both cheeks.
I have a hard pressure forehead and headache evenly light in the morning and worse in the evening/evening. I have a "ringing" tinnitus that sometimes becomes pulsating, also slightly sore eyes and get easily tired, I work 4 days a week. The pain in the carotid arteries goes up and down which sometimes becomes stabbing pain but now a calmer period.
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1 ReactionThank you for your kind reply. I don’t take the aspirin any more unless I get chest pains which I will discuss with my doc. Same with lifting, bending too. Just taking it all in stride as my body ages. I consider myself truly lucky to have made it this far. Every day from here on out is a bonus to be appreciated. Best to you and it is great that you got to go to India. Wow! and, got help there too. It is good to know you are there and experiencing similar circumstances. 😊
Hello:)
I also have FMD in my carotids (and vertebral arteries) and have suffered from neck pain. I have ringing in my ears as well as pulsative tinnitus and headaches. No chest pain but I was having palpitations for some time. I also have idiopathic intracranial pressure(pressure in my skull and face and around my ears). My Drs in Colorado have given me the advice to have annual scans and do the aspirin regimen but I felt alone and scared regardless of this wait and see approach. They didn’t help my neck pain or head pressure. I’ve been seeing an Ayurvedic Dr in India who has helped me a lot with reducing my stress and anxiety which has helped me tremendously. She has also been able to help me manage my neck pain and head pressure through treatment. I no longer have severe headaches or neck pain and the pressure in my head has reduced greatly. I feel reduced pressure in my whole body actually. She also gave me the order to rest and lead a simple life as I can and not to lift heavy things, not to bear down(during a bowel movement for example) and no bending over(for my head pressure). I tell you this not so you’ll take off to India or anything(I’m
in no way trying to give medical advice!) but to say that there may be someone out there who can help you in the ways you need. I know this is a lot of info but in case it helps I thought I’d include more context. I think if it would help you feel more comfortable getting more medical opinions with regard to your neck pain, sinus and heart, then please know it’s ok to consider that. It can be very confusing, scary and hard coming to terms with disease and the nuances of our individual bodies. Please know you are not alone. I hope this helps:)
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1 ReactionI also have been diagnosed with FMD in both carotid arteries and no renal artery involvement. I have serious ringing in my ears and sometimes pain in my neck and left sinus with some chest pain at times. My neurologist says the neck and chest pain are not caused by FMD but I am not sure that is the case. I will see him again after two years has passed. Has anyone else with FMD experienced the neck, sinus, or chest pain?
Hi I was diagnosed with FMD about 5 years ago. I have an excellent vascular surgeon who monitors progression annually via ultrasound. Best to shop around for a specialist who gets involved with research as many are simply plumbers and know nothing about the disease.
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1 ReactionMany thanks for that reply
I’m only diagnosed last week and I’m still trying to process it
I still need carotid and aortic scans
I will concentrate on nutrition and exercise
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1 Reaction@chanda79, you're in the right place here to connect with other people living with fibromuscular dysplasia (FMD)
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1 ReactionI too have recently diagnosed with FMD. As far as I understand there is no specific treatment but we are advised to do all those good things for cardiovascular health (nutrition and exercise) and avoid head trauma. Many with FMD live a normal life span
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