Discussions By Condition: Rare Disases

buerger's disease

Posted In: Rare Disases 12 Replies
  • Posted By: krisi479
  • February 15, 2008
  • 03:25 PM

I have been diagnosed with buergers disease. Was wondering if any on else has it or has any other information on it for long term effects. I do not fit the profile of someone with the disease since i'm a 28 year old female. any information would help. I've read some stuff online but it's helpful to get information from someone else who is going through the same thing. thanks

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  • I have been diagnosed with buergers disease. Was wondering if any on else has it or has any other information on it for long term effects. I do not fit the profile of someone with the disease since i'm a 28 year old female. any information would help. I've read some stuff online but it's helpful to get information from someone else who is going through the same thing. thankshi kris i have buerger's diease also i found out just over a year ago. i'm 37 yrs old. i have had my left leg amputated below the knee an i may be losing my right leg soon. if you would like to chat just email back. good luck.
    kristinabiancamano 1 Replies
    • February 19, 2008
    • 10:29 PM
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  • i haven't had anything amputated yet. The dr told me that if i quit smoking that the symptoms should go away. Did they catch yours early? What other symptoms have you had? I went because my hands were turning blue and i had shooting pains up my arms. I have since been working on not smoking at all. my fingers still tingle and just wondering what your experience is.
    krisi479 1 Replies
    • February 21, 2008
    • 02:06 PM
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  • I have been diagnosed with buergers disease. Was wondering if any on else has it or has any other information on it for long term effects. I do not fit the profile of someone with the disease since i'm a 28 year old female. any information would help. I've read some stuff online but it's helpful to get information from someone else who is going through the same thing. thanksi was just told i had buergers disease i know im almost 36 and a women i don't fir the profile it's very painfull my fingers so far healed but i can't walk or stand for more than 20-40 mins at a time my left pinky always tingles im scared and i felt alone not to many ppl have this disease
    Anonymous 42789 Replies
    • August 13, 2009
    • 04:20 PM
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  • Hi can anyone advise or assist me? I was 24 working full time in a very physically demanding career as a buider of garage doors. One day I had sudden pain behind my knee in my left leg whilst working howerver the pain only lasted about 20seconds therefore I thought nothing of it and continued to work. A few months later i injured my large toe at work and it got infected and yeah my life changed from there: I was in and out of hospital the doctors where saying they dont know whats wrong and after a while my toes changed colour and i had two toes amputated after that still in hospital recovering i had the same pain and where my toes were taken off it was not healing after some time a nurse found i had no pulse in my leg and they found a blocked artery behind my knee. 7 major opperations later I had bypass surgery in my leg, 2toes amputated and they ended up using a artery from my arm and put it my leg. Ive never been a heavy smoker, no family history and ive been diagnosed with buerger's disease. I live in Australia and was born here. I dont really know what to do, it is not recognized in australia and yeah i just feel perhaps either i was mis diagnosed and am suffering something else or nothing or what. before i went into hospital my blood was fine, since then the hospital has prescribed blood thinners for life. Therefore i lost my career in the building industry due to warfarin and my inr levels have been up and down all over the place since then. Plus no test was done to prove i have the disease and the hospital wont do it now cause of the risk involved and the fact im on blood thinners. I guess id like to find people who have this or who have been diagnosed with it where your from and perhaps it would be good to talk about it as i know being diagnosed with it is very severe and life changing. thank you
    christoe 3 Replies
    • August 23, 2009
    • 11:09 AM
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  • i was just told i had buergers disease i know im almost 36 and a women i don't fir the profile it's very painfull my fingers so far healed but i can't walk or stand for more than 20-40 mins at a time my left pinky always tingles im scared and i felt alone not to many ppl have this disease Hi i also felt alone with the disease ive been searching for someone with it for 4 years to talk to about it if you would like to or anyone would feel free to email me at casey.1122@hotmail.com thank you
    christoe 3 Replies
    • August 23, 2009
    • 10:51 PM
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  • Hi i also felt alone with the disease ive been searching for someone with it for 4 years to talk to about it if you would like to or anyone would feel free to email me at casey.1122@hotmail.com thank youHi there, id probelms with cramping in my calf / arches of my feet for a while and with working outside and on my feet a lot id had a couple of small cuts / abrasions that took ages to heal / clear up. around this time last year i hurt a couple of toes at work and the cuts wouldnt heal and ended up as ulcers. it was a bit of a nightmare, especially at night / lieing down / trying to sleep, the pain was fierce and kept me awake a lot. it even affected my work during the day. when i got home in jan i was prescribed oral antibiotics but they didnt work so i went into hospital for iv antiobiotics. neither worked due to the poor / non exisistent circulation to my feet / toes. the hospital tried an iv of iloprost to try and help but the bottom line was the damage was done. the hospital did a dye test through the femoral artery and diagnosed beurgers. i had the toes off and fortunately they healed ok and i got back on my feet quite quickly. i have to say the hospital staff were great and i couldnt have asked for more. i still have problems with my calves cramping, jogging / running is out the window both physically due to the cramps and emotionally it really got me down. walking is ok up to a certain point / distance.as you know the only was to stop it is to stop smoking completely which wasnt difficult in hospital but so much harder when i got out. if youd like to talk about things im at - demp01@hotmail.com
    Anonymous 42789 Replies
    • December 5, 2009
    • 07:33 PM
    • 0
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  • My father has suffered from this horrific disease for over 12 years now. My only advice is to STOP SMOKING IMMEDIATELY! We have been through ***l with him......If anyone would like to talk....email me anytime. For years we have felt so alone as no one else suffered like he does....and now there seems to be more and more cases..... which is horrifying.amisherwood@gmail.comAngela
    Anonymous 42789 Replies
    • August 25, 2010
    • 04:47 PM
    • 0
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  • hi my name is paul i have had burgers for about 10 years since i was 21.i have quite smoking for 5 years started to work again and just recentlygot a nother finger amputated. it has a lot to do with smoking .quite a lot and ya might find it helps to slow down but it may not stop it.the doctors dont know much about what is happing to me, i am on constant pain medsand sleeping pills .you need to get good sleep that helps as well.can contact me at pauljr1976@hotmail.com
    pauljr 1 Replies
    • August 30, 2010
    • 00:58 AM
    • 0
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  • hi my name is paul i have had burgers for about 10 years since i was 21.i have quite smoking for 5 years started to work again and just recentlygot a nother finger amputated. it has a lot to do with smoking .quite a lot and ya might find it helps to slow down but it may not stop it.the doctors dont know much about what is happing to me, i am on constant pain medsand sleeping pills .you need to get good sleep that helps as well.can contact me on bezzabear@hotmail.comsorry about the previous reply. that email address is not working.
    pauljon 1 Replies
    • August 31, 2010
    • 04:00 AM
    • 0
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  • Hello my name is Chelsie. my dad has this disease..i have been around my whole life and seen him suffer alot. he has had countless surgerys and i have been there every step of the way he has had this since 2000 it is exteremly rare. He has been to hand fulls of different doctors.. His current one is going to run a test on shock thearpy to see if it helps with the pain. just waiting to see when thats going to happen. This has put him in a bad place because hes a WORKER he cant sit still they the doctors want him too. im currently in the army and everytime i talk to him it hurts me so much because i have to ask how the pain scale is today. i love him to death and you guys are awesome just keep up the fight and dont give up theres someone else just like you.try and do the things you love and if you cant try your hardest to find something that makes you happy..Also we lived in New York...we moved to Arizona he said the weather helpped the pain out alot not being in the cold and humitiy just keep that in mind...theres always going to good and bad days STAY STRONG!!.
    cstoffer14s 1 Replies
    • August 21, 2011
    • 03:17 PM
    • 0
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  • Sorry to hear that your dad has had so many problems with his Buerger's. Buerger's is a rare disease and unfortunately, not one being aggressively researched. Much of the data about Buerger's is outdated in regards to who primarily gets Buerger's by gender, age, geography, or nationality. The percentage of women (including younger women) has increased dramatically. Also the amount of cases in the United States has not been updated. So little is known really on the cause or effective treatment. Stopping smoking is the only main thing that can help in the disease (if you were a smoker). A high percentage of those with Buerger's also have Raynaud's syndrome as well. Definitely neither one is great to have to go through cold, snowy winters.The pain in the feet, arches of feet, and hands, as well as the swelling and numbness can make even small tasks seem like they are enormous. I know at times I have a very hard time picking up small items, or may constantly be dropping something small out of my hand or fingers without knowing. Stepping on things and trying to be very aware of any type of skin breakdown or gangrene are a daily concern. You can't "feel" gangrene, so looking every day is the only way to really know.What becomes the most aggravating though is the lack of knowledge people have about the disease. If I hear one more time from some unknowing person that my circulation would be better if I.....raised/lowered my feet, did typical vascular excercises to increase circulation, wore tighter/looser socks....I'll scream, lol. Those that don't understand the cycle of the "middle of the night" feet and leg pains and how getting an hour (2 if you are lucky) of sleep a night just isn't enough to fully function the next day, also can be up there on my list of annoyances. When the full effect of what limitations there are now seem to hit.....it's pretty depressing. There are good days where I can feel absolutely fine, then 3-4 days later feel horrendous. I have to remind myself a lot to take things easy on my good days.....because they will suddenly turn into a bunch of bad days.
    pixiegirl 1 Replies
    • September 29, 2011
    • 01:50 AM
    • 0
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  • Hi can anyone advise or assist me? I was 24 working full time in a very physically demanding career as a buider of garage doors. One day I had sudden pain behind my knee in my left leg whilst working howerver the pain only lasted about 20seconds therefore I thought nothing of it and continued to work. A few months later i injured my large toe at work and it got infected and yeah my life changed from there: I was in and out of hospital the doctors where saying they dont know whats wrong and after a while my toes changed colour and i had two toes amputated after that still in hospital recovering i had the same pain and where my toes were taken off it was not healing after some time a nurse found i had no pulse in my leg and they found a blocked artery behind my knee. 7 major opperations later I had bypass surgery in my leg, 2toes amputated and they ended up using a artery from my arm and put it my leg. Ive never been a heavy smoker, no family history and ive been diagnosed with buerger's disease. I live in Australia and was born here. I dont really know what to do, it is not recognized in australia and yeah i just feel perhaps either i was mis diagnosed and am suffering something else or nothing or what. before i went into hospital my blood was fine, since then the hospital has prescribed blood thinners for life. Therefore i lost my career in the building industry due to warfarin and my inr levels have been up and down all over the place since then. Plus no test was done to prove i have the disease and the hospital wont do it now cause of the risk involved and the fact im on blood thinners. I guess id like to find people who have this or who have been diagnosed with it where your from and perhaps it would be good to talk about it as i know being diagnosed with it is very severe and life changing. thank you hi my name is Michael and I live in Asheville North Carolina. I was diagnosed with Buerger's disease in jan. 2011. I have since then lost a index finger and part of my middle finger due to infections. I recently quit smoking after 37 years. I have modeate to severe pain for which I am on medication. I take 200mg. of blood thinner each day. I do construction work and can't hardly stand working in the cold. Pain in my feet and hands during cold spells is unbearable. All I can tell you is to be very careful about cutting yourself or injuring yourself. Healing is a major issue you and I have. I had surgery on my hand in March of 2012 and it still hasn't healed. I have a bone protruding out of the end of my finger. You might want to try the blood thinner that my doctor put me on. I don't do inr test. ( CILOSTAZOL) 200mg. per day. Im 52 years old. I have to take hot baths twice a day just to warm my body up. My feet and hands stay blue. My Vascular surgeon told me to keep my hands and feet very warm, and to wear a hat. Gangrene wiil set up when healing isn't working. I also have Reynaulds disease. The two go hand and hand. Take care, Best of luck and sorry to hear of the diagnoses.Michael
    roanmountain 2 Replies
    • January 5, 2013
    • 01:18 AM
    • 0
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