1. < Autoimmune Diseases

Five days in hospital, no answers: Leg pain and bruising

Posted by longlostbrat @longlostbrat, May 7, 2022

Hello!
My 20 year old son and I were just released from a local hospital after five days and told, "Follow up with a hematologist, rheumatologist, and dermatologist." No one at the hospital had seen this before. I'm thinking the more eyes, the better, so maybe someone here has seen this.
He started with severe leg pain in the back of the left knee. He has a high tolerance for pain because he's had many medical procedures throughout his life including three open heart surgeries due to a congenital heart defect. After the pain came very light bruising in maybe two places, and petecheia all over both legs. This then became bruising all over both legs. The pictures were taken today. The pain started on April 25th, so as you can see, this has been a rapid progression.
His bloodwork over the course of the last five days showed that there was some sort of infection somewhere, though they could not locate it. His wbc count when we went to the hospital on Monday was 4.1. When they released us yesterday, it was 3.08. I don't know if there is any significance to that.
Anyway, I was just hoping someone has see something like this before and can point us in the right *or any!) direction.
Many thanks,
Robyn

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artist01 | @artist01 | May 29, 2022

@astaingegerdm:
Hi Inge:
Here's the second photo, noting the swelling of the right foot/leg.
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Ingegerd Enscoe, Alumni Mentor | @astaingegerdm | May 29, 2022

@artist01 - I’m so sorry to hear about the DVP and stroke!!
I assume that the prednisone for GCA didn’t help your legs much?
Also, I’m a controlled diabetic too with a fairly recent development of lower extremity venous stasis. Some days my lower legs look like shiny tree trunks! I’m not very consistent in wearing compression stockings- they do help.
I saw a vascular surgeon for an opinion- this popped up out of the blue. Using compression stockings helps the lower leg return the blood to the heart plus prevents DVT.
If you haven’t done so yet, have your lower extremity arterial and venous blood flow evaluated. Being a diabetic adds another factor to worry about.
I’m like you- something new happens and I don’t know if it’s autoimmune related or not.
Don’t worry about what people on Connect think about you having several autoimmune diseases in addition to other illnesses- that’s why we are all here! We are able to discuss a variety of problems and compare symptoms and outcomes.

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1 reply
shani | @shani | May 30, 2022
In reply to @longlostbrat "Hi, @becsbuddy I can't remember exactly, but when I tried to post this on another board,..." + (show)
@longlostbrat

Hi, @becsbuddy

I can't remember exactly, but when I tried to post this on another board, it said something to the effect of it sees I have already posted this and it will keep it on hold for a couple days.

I will keep you updated. Right now, he's trying to give me a million reasons why he shouldn't have to go back tomorrow...haha! I can't blame him, but when your Mama instincts say to do something, you can't ignore them, you know?

I would never say this to him, but I'm thinking possible leukemia or ITP.

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I admire your perseverance...ONLY way to go is to be a thorn in their side until you get a diagnosis and treatment plan! Teaching hospital with his records is another plus! Can you locate his former cardiologist/surgeons before you show up in ER? They might either meet you or have a recommendation of someone to meet you. Could be related to his past medical history.

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artist01 | @artist01 | May 30, 2022
In reply to @astaingegerdm "@artist01 - I’m so sorry to hear about the DVP and stroke!! I assume that the..." + (show)
@astaingegerdm

@artist01 - I’m so sorry to hear about the DVP and stroke!!
I assume that the prednisone for GCA didn’t help your legs much?
Also, I’m a controlled diabetic too with a fairly recent development of lower extremity venous stasis. Some days my lower legs look like shiny tree trunks! I’m not very consistent in wearing compression stockings- they do help.
I saw a vascular surgeon for an opinion- this popped up out of the blue. Using compression stockings helps the lower leg return the blood to the heart plus prevents DVT.
If you haven’t done so yet, have your lower extremity arterial and venous blood flow evaluated. Being a diabetic adds another factor to worry about.
I’m like you- something new happens and I don’t know if it’s autoimmune related or not.
Don’t worry about what people on Connect think about you having several autoimmune diseases in addition to other illnesses- that’s why we are all here! We are able to discuss a variety of problems and compare symptoms and outcomes.

Jump to this post

@astaingegerdm
Hi Inge. Thankyou for your response to my email. Actually, I did request a referral to a vascular surgeon, but was told "no (vascular) doctor would touch you with a ten foot pole because you have so many serious health issues". I assume he was referring to my risk for surgery, which I know I'm a risk for, but I'd at least like to have a proper diagnosis. I also asked if he could measure me for compression stockings, but he declined, saying that people get them and then never wear them. Negative or what!!?? I'll pursue this with a different doctor.
I referred to waiting for my 'neurologist' appointment, but I meant to say rheumatologist! I have so many "ologists" on my team...lol
Thanks again, Inge. Warm regards, Laurie

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Mentor
Becky, Volunteer Mentor | @becsbuddy | May 30, 2022
In reply to @longlostbrat "Thank you to everyone for your ideas so far! We came to the ED at VCU..." + (show)
@longlostbrat

Thank you to everyone for your ideas so far! We came to the ED at VCU yesterday and were admitted. Hematology is high on the list of people seeing Sebastian, along with rheumatology and dermatology and a whole slew of people have already looked at him. The pediatric cardiology team have also already seen him. It’s very comforting. No local ED for us anymore.

I’ll let you all know when we have a diagnosis. Thank you, again, so much!

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@longlostbrat Have you been able to learn anything about your son and what the problem could be?
(P.S. I’m just wondering if your name, ‘longlostbrat’ refers, in any way, to you being a military ‘brat.’)

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onthefarshore | @onthefarshore | Jun 1, 2022

Have they ruled out the autoimmune disease Henoch–Schönlein purpura? It can cause bruising like that on the legs. I would request testing if they have already done so. I hope you get answers soon. Wishing you and your son all the best.

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1 reply
Moderator
Colleen Young, Connect Director | @colleenyoung | Jun 4, 2022
In reply to @onthefarshore "Have they ruled out the autoimmune disease Henoch–Schönlein purpura? It can cause bruising like that on..." + (show)
@onthefarshore

Have they ruled out the autoimmune disease Henoch–Schönlein purpura? It can cause bruising like that on the legs. I would request testing if they have already done so. I hope you get answers soon. Wishing you and your son all the best.

Jump to this post

Welcome @onthefarshore. Do you have experience with Henoch–Schönlein purpura? Or another autoimmune condition? I look forward to getting to know you.

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