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Still Undiagnosed Despite Seeing Every Specialty

Hello everyone. A little background info. My name is Kristina. I’m 27 years old and was diagnosed with Crohn’s ten years ago. I’ve always had extraintestinal manifestations. In fact, I was diagnosed with Crohn’s because of one of the manifestations I get, which is Uveitis. I also have skin rashes every once in a while and arthritis when I’m flaring. I’ve been on biologics since I was 18. First Remicade, then Cimzia, Humira, and finally Stelara. I loved Stelara but lost insurance in January and had to stop it. I have insurance now thankfully!

Back in May I started to develop what I thought was peripheral neuropathy in my toes. For about a few weeks it was just that, and I treated it using icey socks. It was annoying and painful but doable. And then I started having issues with activity. Just walking upstairs would have me so exhausted I would have to lay at the top of the stairs while I felt like I was dying because my heart was racing and I felt like I couldn’t breathe. I took an spo2 monitor with me one day and after just walking up stairs my bp went from something lower than 120/80 to 150/90 and my oxygen saturation was in the 80s.

I went to the hospital for the first time then. My hemoglobin was at a 5 and I received two units of blood. I’ve never been anemic before, especially not that severely. But I went home and tried to just move past it. Only for my feet to start swelling. They swelled so bad that I lost all sensation in my feet and the swelling went all the way up my calves and into my knees. I’ve been hospitalized twice, both for a week, and have seen every single specialist but GI both times I was there. No one knows what’s going on.

I lost the ability to walk a month ago and use a wheelchair to get around now. I only recently started being able to walk to the end of the room using a walker, and with my very anxious mom behind me to catch me. I have been on heavy lasix that never helped at all. I’m still on lasix daily. The swelling got so bad that I developed massive blisters on my feet, and now I have large scabs all over my feet and up my ankles. I’m fighting through the pain of having my feet up in an attempt to get the swelling to go down, but it’s slow going. I’m in so much pain and just at my wits end. No one has any answers and I’m losing it a little bit.

Does anyone have any idea what could be going on? No doctors seem to have any answers, so maybe one of you might. I’m finally seeing my GI on Monday. My primary care seems to think he’ll have all the answers. But I’m trying to accumulate different diagnoses to have him look into, because after him I’m out. There are no more specialists for me to see.

Please help if you can! And I truly appreciate you taking the time to read this.

my little penguin

Staff member
Did you see dermatologist? They would Biopsy skin lesions /rashes ?
Auto inflammatory is a zebra that doesn’t appear on most docs radar

My kiddo has crohns (since age 7) juvenile arthritis since age 10 and Sweets Syndrome (dx at 11 or 12 but had it since he was a toddler )
Sweets syndrome is auto inflammatory neutrophilic dermatosis which has a lot systemic symptoms
He took kineret daily for it and now takes ilaris

he also takes Stelara/mtx for the crohns .arthritis

the dermatologist was the key to diagnosis

did you get back on Stelara?


Well-known member
San Diego
The fact that they are giving you lasix suggests that they might be treating you for heart failure (making the kidneys do the work since the heart isn't handling it). That's what happened to me when I had the extra-intestinal manifestation of pericarditis - Crohn's inflammation of the membrane that surrounds the heart inducing restrictive heart failure. For me that was successfully treated by surgery to remove the pericardium, which cured the heart failure.

But your case sound much more complicated than that. So perhaps it's something entirely different. What does your GI say?