Discussions By Condition: Cardiovascular disease

Blue Rubber Bleb Syndrome

Posted In: Cardiovascular disease 5 Replies
  • Posted By: Scotty
  • July 20, 2008
  • 05:27 AM

I was diagnoseed with BRBNS about 6yrs ago, i'm a 38yr old male, and it was my family GP who recognised it and referred me to a Dermatologist.
One thing that concerns me is after a recent shoulder injury, which i believe to be a Cervical Disc Injury, i think i have more lesions.
My new GP treated my shoulder injury as general back pain giving me anti inflamatory's and pain killers. After another visit i was sent to a Physiotherapist who was none the wiser of my pain. Back to the new GP who sent off blood tests checking the liver.kidney and cholestorol, all which came back ok. The pain at the shoulder blade had gone but I was still left with tingling in my thunb and two fingers of my left hand and muscle cramp from the very top of my left arm going into my shoulder area. Not sure if this is related to the shoulder injury or BRBNS as am aware of iron deficiency with BRBNS.
Also can BRBNS be passed onto my children?

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  • Hi Scotty,This is a long time from when you posted your question so I hope you still check and it is in someway helpful. I am a 37 yr old female and have been a guinea pig for specialists in the Asia Paciific region regarding BRBNS for years. :eek: None of which have been the least helpful! It is such an unknown area and until recently there has been limited interest in my case due to it's unknown territory. ***l there's only around 200 of us documented worldwide but I am hoping more will come forward!I have a long story so I won't bore you with it, but have a lot of my own things to tell on BRBNS so at anytime should you want to ask questions feel free!!! One thing I DO know is that it is not genetic. I have two beautiful healthy kids and that was a huge concern of mine!! If I in anyway thought it could be passed on I would never have taken the risk, but there they are :)It took me years to establish with Doctors and specialists that I wasn't faking the pain that can be associated with BRBNS!! I was humiliated many times as people thought I was faking. When I finally read an article oneday that described the exact pain I'd been experiencing I was absolutely relieved!! I was normal :cool: Lol!! There are many things I could discuss regarding this syndrome so feel free to write. I live a normal life regardless. I have lesions on my trunk area, through my spine, in my spleen now and lining of my lung. My placenta was also very unusual with my second baby so I'm lucky she came when she did!!I recently suffered breast cancer and lost a breast which is why my BRBNS case suddenly became of interest to MANY specialists and surgeons! They had to cut right through my lesions. I had the best team eva, 3D and 4D imaging galore and other than my blood work which was totally bizarre lol, it all went to plan! They did think I would bleed out and gave me a 10% chance of making it, but I'm a mum....what were they thinking Lol!!! :)Anyway I have said enough!! I have not yet read documented evidence of anyone with lesions in all the areas I have then (batr 1 girl I read about today), I have not read the effects of chemo on other sufferers, in depth surgery in the trunk area, it's mainly gastrointestinal!! I am a nurse by trade, but after my cancer and knowing so little about BRBNS I decided a change of career was in order!! Reach for the skies I say!!! Hope things are going well for you now.Regards Odette I was diagnoseed with BRBNS about 6yrs ago, i'm a 38yr old male, and it was my family GP who recognised it and referred me to a Dermatologist.One thing that concerns me is after a recent shoulder injury, which i believe to be a Cervical Disc Injury, i think i have more lesions.My new GP treated my shoulder injury as general back pain giving me anti inflamatory's and pain killers. After another visit i was sent to a Physiotherapist who was none the wiser of my pain. Back to the new GP who sent off blood tests checking the liver.kidney and cholestorol, all which came back ok. The pain at the shoulder blade had gone but I was still left with tingling in my thunb and two fingers of my left hand and muscle cramp from the very top of my left arm going into my shoulder area. Not sure if this is related to the shoulder injury or BRBNS as am aware of iron deficiency with BRBNS.Also can BRBNS be passed onto my children?
    Odette72 1 Replies Flag this Response
  • Odette,You are the first person to actually write to me about BRBS. Now am going to be the grand old age of 41 this year and am still looking out for more lesions. Haven't been back to GP or Dermatologist since last visit about condition but feel I'm getting more lesions as I get older. I mostly have them on my legs and arms. Hey the legs i can get away with, just leave them to be hairy!!The arms and hands are showing more,still haven't worked out why the lesions are raised at times and not other times. Have one lesion that is on the inside of the hand at the bottom of my index finger that get's hard now and then and then affects that finger working properly as seems to be pulling or squashing the tendon.It's like a small pea under the skin which is sore and creates pins and needles in the hand.Am still checking the kids( have 3 of them) for lesions as not convinced that it cant be passed on genetically as I told my older brother about condition and he said that he had a couple of lesions, nothing as bad as mine, but he still had them. Too much of a coincidence for such a rare condition.Told him to not get it diagnosed as Insurance companies run a mile from you when they know about it.Also read somewhere that this may affect people of a celtic origin, dont know if that's bull or not. But Scots and Irish did spread around the world!!One thing the Dermatologist did, was to use a Laser to remove e lesion on the top of the hand between the thumd and Index finger. it removed the pigment and you can see a small circle where the lesion was, but it never returned to that area.Am thinking about going for a full check up, now I've reached that mile stone age of being in my forties and ask them to arrange a scan to check it has not spread further internally. All of mine were external and very visible but had not spread to internal organs.Keep in touch, will let you know if I go for scan and results.Brian(Scotty)
    Scotty 1 Replies Flag this Response
  • It CAN be hereditary. I have this, along with 5 of my siblings, my biological father and both my children.
    Anonymous 42789 Replies Flag this Response
  • Hi allOMG, I have finnally found some other sufferers! I want to point out that it is my baby daughter who has BRBNS and we have been told that it is hereditary but niether of us have any obvious lumps. I am concerned about any pain others have as I have been told that there shouldn't be any from the skin only liesions. It has been impossible to find good information on the subject as it is so rare, one thing I have discovered is that my little girl is a potential time bomb waiting to go off at any time. It seems to be a matter of wait and see if she develops internal lumps, bleeding and amemia particularly as she becomes a teenager. Life goes on as normal for her, we are left worrying.Does anyone know where to find good info??
    Anonymous 42789 Replies Flag this Response
  • On behalf of my 91-year-old mother, diagnosed about 40 years ago, very rare then and was never treated it for it. Majority of blebs were internal, starting in her mouth. She hasn't been diagnosed with further interior damage but having done some research, I believe it then moved to her stomach (gastrointestinal), then her lungs (COPD). She has been hospitalized 3 times in the last 9 months with complaints of not enough oxygen, anxiety, swollen face and pain. I pray for her every day.
    Anonymous 1 Replies
    • February 22, 2014
    • 05:36 PM
    • 0
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