Just need to vent

[gemini1968]

Hi, I've posted a few times in the past about my MVP (dx at age 12) and about my mom's St. Jude valve and aortic dissection (my mom passed away in July). Two years ago for the first time my echo showed the valve had thickened and I had mild regurgitation. I'm 36 now and just had another echo on Friday. Last night the nurse practitioner from my cardio's office left a message on my machine at home while I was at work "I'm calling about your results. It's not an emergency, just call me back." Of course I"m annoyed she didn't call me at WORK, and the fact that I signed a form giving permission to leave info on my machine...but anyway this vague message had me a bit worried. First of all, any time a dr's office actually CALLS THE PATIENT I worry because usually you have to call them after a test. I call today and she IS NOT IN THE OFFICE Until tomorrow and dr. is on vacation. How frustrating. I fully admit to being the type to "worry ahead of time" so I'm just venting here until I get more information tomorrow.
I also have a "lupus like" connective tissue disease and psoriatic arthritis...PA can affect the aortic valve.

Thanks for listening.
Michele in NJ

 

[Phyllis]

If the disease doesn't get you, the anxiety of waiting for the test results will! Hang in there and try not to imagine the worst- could even be they just need to redo it!

 

[gemini1968]

Yes! I said I'll have a heart attack from the stress of waiting and wondering!

 

[strawberry]

Don't you hate that? I hate getting home to a message to late to call back when they darn well have your work number. One time I called back and she was "with a patient and then the office is closing." I insisted on holding. I've taken to checking my home messages from work in the afternoon cause it happens with other stuff too. Anyway, I'm interested in your "lupus-like" connective tissue disease. My various docs say I have systemic connective tissue issues but I test negative for all the auto-immune stuff. I have loose limbs, loose valves, loose kidneys, etc. Do you have a myxomatous valve? I'm just curious cause I do and I have AI and TR also. If I were you and the office is open with ANYONE there, I would drive there and get a copy myself. In fact, I've done that.

Take care.

 

[gemini1968]

Thanks, Strawberry. As of two years ago, my only heart issue was the MVP...oh and from 18-25 I had several episodes of tachycardia that sent me to the ER. For the CTD and psoriatic arthritis I take Plaquenil, ENbrel and methotrexate. Are you taking anything to treat it?

 

[strawberry]

That's just the problem: I don't have any diagnosis of a specific condition. All my doctors say: have you been checked for lupus? My foot doctor that I just went to asked the same thing and ran all sorts of blood tests. I just have a bunch of different things that the various specialists seem to think are somehow connected: interstitial cystits, renal insufficiency, a kidney that falls, cysts, cervical dysplasia, myxoid valve(s), unexplained edema, a rib that pops out of place (very painful), and I heal very slowly. Did you test high for ANA or another autoimmune factor?

My new cardio explained my myxoid valve and I said what about the aortic and tricuspid? And she thinks it's the same process and said I probably have other connective tissue issues which I do obviously. But I've never gotten any kind of dx.

 

[gemini1968]

No, my ANA was neg...if it was pos. he probably would have given me the "official lupus" diagnosis. Are you seeing a rheumatologist?

 

[strawberry]

No, especially now that my copay went up. I've arlready spent a lot on my foot and I have twelve sessions of PT to pay for. I'll just keep copy of my lab results til something else pops up. Keep us posted on your results!! Hopefully they're fine.

P.S. GO EAGLES!!!!!!!!!!!!!!!!!

 

[gemini1968]

May I ask your symptoms? Def. see a rheum. when you can! I will post as soon as I get my results.

 

[strawberry]

Gemini, I tried to PM you but you don't have it enabled. My symptoms are just as described with the various conditions...plus fatigue and swelling, and various joint aches.

 

[gemini1968]

hmmmmmm, how do I enable that?

 

[gijanet]

Marfan's syndrome????

Marfan's syndrome????

Just a thought, but have y'all ever been evaluated for Marfan's syndrome?
MVP is common among those with Marfan's.

What is the Marfan syndrome?

More than 200,000 Americans have the Marfan syndrome or a related connective tissue disorder. The Marfan syndrome is an autosomal dominant systemic disorder of connective tissue that affects the eyes, skeleton and blood vessels, among other tissues.

http://www.marfan.org/nmf/GetSubContentRequestHandler.do?sub_menu_item_content_id=5&menu_item_id=42

Hope y'all get answers soon. Hugs. Janet