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Marfan's Clinic, undiagnosed, maybe EDS?
Hi everyone, I have an appointment coming up in June at the Marfan's Clinic to try and determine what sort of connective tissue disorder I have. My current doctor outside of Mayo suspects atypical Marfan's, and he is concerned about getting my heart checked. However after my genetic testing panel I think it is more likely on the Ehler's Danlos - Osteogensis Imperfecta spectrum given the gene that my mutation was found in (COL1A2).
Will they be able to still help me in figuring out what's going on even if it turns out not to be Marfan's? Do cardiologists also help in figuring out why someone is fainting and often lightheaded? (That's one of my myriad of symptoms that's been bothering me the most.)
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Oh my goodness, yes! I am a MN cardiology patient with systemic issues. Their knowledge and integrative approach sets them apart. What campus are you going to and when is your appointment? I found this about their model of care:
https://history.mayoclinic.org/toolkit/mayo-clinic-model-of-care/#:~:text=The%20Mayo%20Clinic%20Model%20of%20Care%20is%20defined%20by%20high,the%20practice%20continues%20to%20evolve.
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1 ReactionI'll be going to their clinic in Rochester! I've heard very good things about them, and reading the model of care definitely makes me feel better!
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1 ReactionDuh, you said June! 😀
One thing to keep in mind is that they are methodical about exploring all possibilities. You may need to see other doctors and that may take time. Be prepared to learn their process and let them walk you through it. How are you feeling now? Have they told you how long you will be there?
It's looking like it will be 2 days, but possibly more if they need to transfer me and stuff. My symptoms are basically steady, but emotionally I'm feeling optimistic if a little nervous about going down there.
@gzezulka
I have hypermobility and undiagnosed hEDS. Other than feeling lightheaded and feeling like fainting, what are your other symptoms?
A cardiologist should be able to check your heart function and do testing to see if there is a tie to your lightheadedness. A pulmonologist can check lung function. Bloodwork panels should be done to check iron and thyroid levels. A neurologist can evaluate nervous system and your symptoms to see if you have neuropathy.