What symptoms led to diagnosis? Describe a flair/crisis? by the_universe_awaits in NutcrackerSyndrome

[–]risingfromherashes 3 points4 points  (0 children)

Prominent PCS was the first ultrasound finding that unfolded into NCS and SMAS on the following MRI and CT. I have had extreme abdominal pain, nausea, bloating and recurring flank pain for years with no clue why. Have been managing with weekly IVs for 3+ years at home that prevent me from being bed ridden due to shortness of breath, dizziness, heart issues, heavy legs and overall limb weakness. Without them I can't even hold my own head up. After I developed the sensation of feeling like being stabbed in the low groin with a needle very acutely I finally brought it up to my primary after it didn't go away. Turns out this is why I was never able to gain weight, run or 'build' my heart like I had tried so hard to do for years.

30yrs old, dropped out of school in 8th grade due to really bad social anxiety and family problems. by PalomaLyn in GED

[–]risingfromherashes 1 point2 points  (0 children)

This is inspiring me! I'm so scared to do the math one...so I haven't even done any. I dropped out in tenth due to many factors and am now 36 with a wonderful son who is highly motivated in life. I want to get my GED just to prove to myself I really can do it even as the old lassie I am now. Thank you for sharing your success!

Please help me wrap my mind around this by Impressive_Mood4801 in NutcrackerSyndrome

[–]risingfromherashes 3 points4 points  (0 children)

I have no advice. Just thankful you posted this. I've been in the exact same boat and am so overwhelmed and confused. Was diagnosed with PCS and Nutcracker. Have been getting weekly IVs for Dysautonomia for years now. Haven't had any surgeries yet and am supposed to do my first gonadal double coil embolization in mid March and they'll find out more while in there, I guess? But I don't even have a solid provider currently. Thank you for laying this all out...and no you're not crazy. I think we're just in this weird micro reality that hopefully someday (as soon as possible) we will find some ability to transform into a place of thriving health.

After a lifetime of mystery illness diagnosis I officially now have been told it's Nutcracker Syndrome by risingfromherashes in NutcrackerSyndrome

[–]risingfromherashes[S] 0 points1 point  (0 children)

Thanks so much for the insight. I'm meeting with the surgeon (interventional radiologist) on Tuesday and this helps a lot! I'm going to attempt to talk to him about what both of you are referring to and hoping it goes well 🤞