It appears you have not yet Signed Up with our community. To Sign Up for free, please click here....



Rare Disorders Message Board
Post New Thread   Reply Reply
LinkBack Thread Tools
Old 05-08-2013, 06:48 PM   #1
Newbie
(female)
 
Join Date: Jan 2013
Location: US
Posts: 9
hhill HB User
Question countless blue tumors

Hello all, I've had a wonderful experience on this site, and thought I would post about a rare (?) Condition that I have had since birth, that the ladies on my moms side all have. All over my body there are bead sized angiomas (though some docs call them hemangiomas.) That are bright blue and purple in color. They are round and sit right below the skin. I have a large constellation of them on my neck, and my mother had a quite large cluster, later removed, on her wrist. I estimate I have spmewhere between 100-150 of these over my body, and every fee months I gain a new one. I have mot consulted a doctor on the subject in quite a long time, but last I was told they were benign. Had them all my life and never thought too much of it, except when I struck one it would hurt and it seems more and more are popping up. I basically have a constellation of blue stars on my body. People are always telling me I have blue pen on my neck!

Has anyone seen this or have info? Have only met one doctor w one of the blue tumors before, she recognized the condition during a physical.
:
I am suddenly interested bc I have been having some general symptoms for months which I'm not sure I can attribute to iron deficient and pernicious anemia which I have:
Daily headaches
Fatigue
Growing pains
Brain fog
And occasionally pain from my upper left quadrant.

Maybe related, maybe not but still interested to meet anyone w info or the tumors themselves!

 
Reply With Quote
Sponsors Lightbulb
   
Old 05-08-2013, 10:13 PM   #2
Senior Veteran
(female)
 
ladybud's Avatar
 
Join Date: Jun 2012
Location: Colorado
Posts: 5,121
ladybud HB Userladybud HB Userladybud HB Userladybud HB Userladybud HB Userladybud HB Userladybud HB Userladybud HB Userladybud HB Userladybud HB Userladybud HB User
Re: countless blue tumors

Do you have neurofibromatosus? (Von Reckinghausen disease) This is hereditary and many times the skin tumors are bluish in color. You can look up pictures on the internet to see if they look like yours or are different. If it is this, you can get them inside the GI tract, which can interfere with absorption of nutrients. Because of the left upper quadrant pain, I would see a GI Dr. if it is neurofibromatosus. There is an increased risk of colon cancer in that disorder, so just to be cautious, a colonoscopy may be needed. The skin tumors are small, kind of soft to rubbery feeling and benign.

 
Reply With Quote
Old 05-09-2013, 09:55 AM   #3
Newbie
(female)
 
Join Date: Jan 2013
Location: US
Posts: 9
hhill HB User
Re: countless blue tumors

Ladybud thank you for your reply. I do not know ifi have that condition, however the same ladies in my family with the tumors also have a history of colon cancer. I looked up some photos of the tumors from that condition however and they are much more severe than ours. While ours are 3d if you will, they are almost always beneath the skin and are bright bright blue in color. I will look into it more, and thank you for your reply!

 
Reply With Quote
Old 05-09-2013, 10:18 AM   #4
Senior Veteran
(female)
 
ladybud's Avatar
 
Join Date: Jun 2012
Location: Colorado
Posts: 5,121
ladybud HB Userladybud HB Userladybud HB Userladybud HB Userladybud HB Userladybud HB Userladybud HB Userladybud HB Userladybud HB Userladybud HB Userladybud HB User
Re: countless blue tumors

Neurofibromatosis patients also usually have "cafe au lait" spots on the trunk somewhere. These are light brown speckled areas, sometimes a few inches large, and they look like coffee spilled on the skin. A biopsy of one of the bumps by a derm can confirm it if you have never received a formal diagnosis. It is primarily a clinical diagnosis though, but varies widely in terms of severity. It is important to confirm for genetic counseling purposes since it is hereditary.

 
Reply With Quote
Old 05-16-2013, 11:05 PM   #5
Newbie
(female)
 
Join Date: Jan 2013
Location: US
Posts: 9
hhill HB User
Thumbs up Re: countless blue tumors

Just thought I would let you know-
Making an appointment with my derm for later in the summer and will ask for a diagnosis, however I have been recently led to believe that quite realistically mine is a condition called "Blue Rubber Bleb Nevus Syndrome," a rare malformation of venous cavernous tumors that are almost always bright blue in color.
I appreciate the help!
h

 
Reply With Quote
Old 05-17-2013, 10:08 AM   #6
Senior Veteran
(female)
 
ladybud's Avatar
 
Join Date: Jun 2012
Location: Colorado
Posts: 5,121
ladybud HB Userladybud HB Userladybud HB Userladybud HB Userladybud HB Userladybud HB Userladybud HB Userladybud HB Userladybud HB Userladybud HB Userladybud HB User
Re: countless blue tumors

Very interesting! I've never heard of it, but will look it up to learn more. Thanks for the update.

 
Reply With Quote
Old 10-21-2013, 07:59 PM   #7
Junior Member
(female)
 
Join Date: Oct 2013
Posts: 16
LunarEclipse HB User
Re: countless blue tumors

Did you know perfectly normal moles can be blue? It's completely harmless and nothing to worry about, some people are just born with it. You can just have a couple that are blue or all of them are blue.
A friend of mine had one and I pointed it out to her and haha she'd believed for years it was just a pen mark that hadn't rubbed off lol bless her. This is what made me think of you because you mentioned people saying they looked like blue pen on your neck.

Anyway they are nothing to worry about unless it was originally a brown mole that turned blue or they do any of the "normal" abnormal things moles do that suggests they are malignant. I have a feeling (but I may be wrong) they are a bit more sensitive to sun so it's worth putting sunblock on them in summer.

Although I see you have a diagnosis that isn't quite what I'm talking about but just thought I'd share that little bit of information for anyone else that stumbles across it.

 
Reply With Quote
The Following User Says Thank You to LunarEclipse For This Useful Post:
luca689 (10-22-2013)
Reply Reply

Tags
anemia, hemangioma, tumors



Thread Tools

Posting Rules
You may not post new threads
You may not post replies
You may not post attachments
You may not edit your posts

BB code is On
Smilies are On
[IMG] code is Off
HTML code is Off
Trackbacks are Off
Pingbacks are Off
Refbacks are Off




Sign Up Today!

Ask our community of thousands of members your health questions, and learn from others experiences. Join the conversation!

I want my free account

All times are GMT -7. The time now is 08:24 PM.



Site owned and operated by HealthBoards.comô
Terms of Use © 1998-2014 HealthBoards.comô All rights reserved.
Do not copy or redistribute in any form!