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Fibromuscular dysplasia (FMD): Want to connect
Heart & Blood Health | Last Active: Mar 17 7:31am | Replies (112)Comment receiving replies
Hi @roch,
Going in to address and investigate a GI bleeding issue and finding an entirely different diagnosis on top of that must have been reeling. @roch, before the discovery of possible fibromuscular dysplasia, was your GI bleeding issue resolved?
As you look to your appointment with a vascular provider and the questions you are hoping to address, I'd like to also invite @yvonnewh2652, @chanda79, @stpaulpoet52, @geechiegal, and @jwillits8 to this conversation. Each was diagnosed with fibromuscular dysplasia and may be able to offer suggestions or questions they wished they would have asked their provider when first diagnosed.
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@JustinMcClanahan
@ rich
I was diagnosed with FMD about 3 yrs ago After seeing a neurologist vascular dr in Madison WI, I was told to just take a low dose aspirin per day. I’ve had lots of strange symptoms past few years Drs have not been able to figure out. Mainly sudden faint feeling with HR going way up. I haven’t thought about the FM dysplasia in a long time but perhaps it is part of my problem. I just had stress test with nuclear cardio gram. All ok.
I’m having a PET scan today head to toe. I’m hoping something show’s
up. I’ve become weak and use a Walker to get around due to the sudden feeling of faintness. I also have cervical neck Dystonia. I get Botox for that and the dr has listened to me well. He says it’s the arrhythmias and tachycardia causing my issues. I haven’t mentioned FMD to him.
So after my PET scan today, depending on what shows, I will start stressing the FMD to all my drs. Not sure what can be done for FMD. I’ve tried to get an appt with Mayo, but since my local drs have done so many tests, scans, etc, Mayo doesn’t think they can do any more. I live in small town, basically rural clinics, hospitals. Not a lot of specialists. I’ll try to reply with my PET scan results. I was able to talk my pulmonary dr into it due to a lung nodule. He ordered head to thigh due to all my issues. Thankful for my Medicare supplement plan, I can go anywhere and never see a bill. Supplements are expensive but well worth
it. So thankful I got rid of the advantage plan.