Discussions By Condition: Medical Errors

Lupus: Diagnosed Jan 2007! Misdiagnosed and sick for over 15 years..

Posted In: Medical Errors 11 Replies
  • Posted By: LadyAdena
  • April 13, 2007
  • 01:43 PM

Missed diagnosed for years and years and so sick with extreme fatigue, pain, stomach problems..

Lets start in 1992 Crohns they said or irritable bowel syndrom...
That seemed to get better cause I cut out the carbs and ate protien....

Lived with extreme fatigue and pain for years and years just got so bad this past year....

In Sept 2004 I was so sick I went to the doctors and was sent to take some blood tests a week later the doctor called and said he need to see me right away. When I got there he said that my blood counts were so low he was amazed that I was not dead he looked at me and said that I was extremely sick and that my blood counts were so low that the pathologist called him and said that this lady is extremely sick and he was sending my blood out to be tested for Lukemia.. Blood counts were at 80 and normal is above 120.... Lukemia test came back negative..

The reason I went to the doctors in the first place was because I had these sores all over the top of my head. There were about 20 and they were bleeding and sore and never seemed to heal... They were causeing extreme pain and headaches..

I was then sent to a dermitologist and perscribed steriod lotion to put on. and Antibiotics...

Neadless to say I have been on antibiotics for 3 years straight because these lessions on my head have been spreading to my face neck and back.. The antibiotics have help for the few weeks I used them but about two weeks later the lessions became so sore and red all over again..

As of Feb 2006 I was hospitalized over and over again with my Lymphnodes so swollen in my throat and neck and back of my head that they tested me for Non-Hodgkins Lymphoma and the doctors suspected that is what I am developing but the anitbiotics have made them go away and cancer doesn't get better with anitbiotics one dr said..

I have choked on my foods and been so sick and as of Feb of 2007 my chest has been hurting so bad that it feels I cant breath.. Drs in emergency said it was around my heart and lungs and it was called pleursy and that is a symptom of Lupus.. well they perscribed me anti- inflamitories and to take them as It hurts.. So I have another symptom that has gotten worse and worse and Now I know it is Lupus...

So There is now cure.. My body has taken it upon itself to attack itself..
and kill by inflamation...

There has to be something better to do..

Well I started some natural alternatives.. Been Juicing fresh fruits and veggies cutting out harmful toxins that are in our foods.. Making fresh veggie soups and rinking the liquids all day..

YOu see My daughters 8th birthday last week and I just felt like I was going to die cant even function with the extreme pain and sores and weakness.. it was sad at Easter I couldn't even sit and enjoy supper with all my kids. Had hit the bed with chest pains and dizzyness.. As the years go by Im worse and worse.. Been on some forums for Lupus and these peeps with Lupus are so sick...

So with that said YES after 3 weeks of changing what and how I eat. My lympnodes are gone not swollen anymore and my extreme weekness and fatique are now just tiredsome.. I am able to sit up and enjoy live a little better.. I believe that its gotta be up to me how I wanna live this life..

Lupus Get of my back..

LadyAdena:o
Thank you for listening to me... I feel alone here sometimes even though there are lots around me to help me.. I still feel alone..

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11 Replies:

  • Just wanted to add that I had Helicobacteria Pylori and the drs said that that is why my blood counts were so low and was given antibiotics Nov 2004.. Finally I asked for a second opinion and Had a biopsy in Nov 2006 because pylori can cause cancer of the stomach and In November I was sooooooo sick... Biopsy came back normal.... Go figure.... Its really a guessing game sometimes... LA:mad:
    LadyAdena 4 Replies Flag this Response
  • What a story, especially the part about the blood count issue in 2004. Glad to hear you made it through that!You might want to speak with a nutritional specialist or related professional about taking Chlorella supplements. They contain a lot of antioxidants and seem to be useful in boosting the immune system. I came across them last week, called Kyo-Chlorella. The company also makes a similar produce called Kyo-Green which is for energy. You might want to consult with a doctor before taking them because of your condition (don't know if there is any possible risk with Lupus). Good luck!
    Anonymous 42789 Replies Flag this Response
  • Thanks.... I really don't know how I got through it.. Now that I think about it I wasn't sick as I am now. In 2004 I just did what I usually did but had a lot of dizziness and just felt terribly ill and with that said I kinda ignored the fear of dieing. I continued with life and had extreme headaches and one night I got out of bed and my body just stood there I hung on to the bed post and tried to call to my husband but I couldn't move or speak now that was about 4 months later. I went to emergency and they took blood test and they came back FLAT. The doctors said that because I lost all my blood that it was coming back abnormal, that it was Flat meaning our blood cells are like a round bowl and that the middle of the bowl carries oxegen and my blood cells are flat and not carrying oxegen to my organs very well that is why I had a problem thinking and feeling numb. So was sent home and said that our body make a new turnover of blood every 4 months and I will get better slowly just give it time.. Wow I gave it time and more time and more time.. My blood counts did get better slowly over the next couple of years but my Lupus Just got worse and worse. Low Blood counts, extreme fatigue, joint pains, mostly the sores on my head became inflamed and sore and started to spread to my face last year and infections from the lessions so Jan and Feb I was so sick with the lymphnodes swollen neck, armpit and groin... Antibiotics after antibiotics.. Seems the only thing that really is working now is the Juicing..Remember that the enzemes of the Juice will die in 15 minutes so it must be drank right away... Must make good blood so I have to do something drastic now.. LA:rolleyes:
    LadyAdena 4 Replies Flag this Response
  • How is your blood panel now? Is there anything that stands out? Have you spoken to doctors about supplements to try and fix the problems? The fresh juice plan seems like it's working wonders, it might be a good idea to speak to a nutritionalist about supplements that can provide the same kind of vitamins and nutrients in the fresh juice. That way you can have the fresh juice AND additional supplementation to boost the effect. Are you taking any antibiotics now? They can really mess up the body because they kill off everything including good bacteria.
    Anonymous 42789 Replies Flag this Response
  • My Blood counts are at 118 last month so that is good. Still low but just under normal 120 to 400. I still feel weak and dizzy. My last bout of antibiotics was March 1st for a 10 day and was very sick and chest pains were bad but only given anti inflamitories. It was so painful to breath. Told my hubby I'm so sick and that we have to do something better than this over and over again and I knew that the biotics were taking a tole on my body.. Juicing I used to do about ten years ago and felt so good. I do take vitamin C, Flax seed oil. and Kelp for my lungs. As of right now its 8:30 in the morning and just a slight faint pain around my heart and tiredsome. But that is good because last month I could hardly get out of bed.. so I am better Thanks for your replys.. I have no mouth sores the lumps in my neck and mouth are gone totaly gone and its been only a month and a half since on antibiotics buy this time i would start to get sick again and back out to the hospital, but I am better and I am able to swallow my food better that was the worst feeling of all the choking of my food in front of my kids... Oh yes lots of green tea everyday all day.. LA:o
    LadyAdena 4 Replies Flag this Response
  • Dear Lady Adena .... You are very strong to have fought this battle for 15 years!! Keep fighting and stay positive, I find that is very effective in keeping me going.:)
    egovid 11 Replies Flag this Response
  • Hi Lady Adena, your story is a tough one as well as it is giving hope to those still searching as we are for my hubbie. I wanted to let you know about another supplement which seems to do little miracles for my husband. It is called Intramax from drucker labs. It is a 100% organic supplement, energizes, just gets to whatever needs some assistance within your body. It is not going to heal you but it probably will help you some. In addition I want to say, yes, yes, yes, to chlorella! Kyo-chlorella, sunshine-chlorella, chlorella vulgaris....it does not matter too much which one you take as long as it is 100% organic, no other ingredients, no water mixed in and not in a cellulose wrap. Get the powder or compressed pills. Other holistic help would be accupuncture, massages, yoga...those are the ones we do together and no it doesn't heal but it sure helps my man big time.All the best to you, you are in my thoughts and prayers.Bibi
    Anonymous 42789 Replies
    • October 10, 2007
    • 02:41 PM
    • 0
    Flag this Response
  • It me ladyadena havent been here in a while been sick right now Im in Toronto and tommorow I will go to toronto western lupus clinic... so sick again and have to see what they are gonna do I have liver problems and on high doses of antibiotics again...cya LA
    Anonymous 42789 Replies
    • October 11, 2007
    • 04:04 AM
    • 0
    Flag this Response
  • Missed diagnosed for years and years and so sick with extreme fatigue, pain, stomach problems.. Lets start in 1992 Crohns they said or irritable bowel syndrom...That seemed to get better cause I cut out the carbs and ate protien.... Lived with extreme fatigue and pain for years and years just got so bad this past year.... In Sept 2004 I was so sick I went to the doctors and was sent to take some blood tests a week later the doctor called and said he need to see me right away. When I got there he said that my blood counts were so low he was amazed that I was not dead he looked at me and said that I was extremely sick and that my blood counts were so low that the pathologist called him and said that this lady is extremely sick and he was sending my blood out to be tested for Lukemia.. Blood counts were at 80 and normal is above 120.... Lukemia test came back negative.. The reason I went to the doctors in the first place was because I had these sores all over the top of my head. There were about 20 and they were bleeding and sore and never seemed to heal... They were causeing extreme pain and headaches.. I was then sent to a dermitologist and perscribed steriod lotion to put on. and Antibiotics... Neadless to say I have been on antibiotics for 3 years straight because these lessions on my head have been spreading to my face neck and back.. The antibiotics have help for the few weeks I used them but about two weeks later the lessions became so sore and red all over again.. As of Feb 2006 I was hospitalized over and over again with my Lymphnodes so swollen in my throat and neck and back of my head that they tested me for Non-Hodgkins Lymphoma and the doctors suspected that is what I am developing but the anitbiotics have made them go away and cancer doesn't get better with anitbiotics one dr said.. I have choked on my foods and been so sick and as of Feb of 2007 my chest has been hurting so bad that it feels I cant breath.. Drs in emergency said it was around my heart and lungs and it was called pleursy and that is a symptom of Lupus.. well they perscribed me anti- inflamitories and to take them as It hurts.. So I have another symptom that has gotten worse and worse and Now I know it is Lupus... So There is now cure.. My body has taken it upon itself to attack itself..and kill by inflamation... There has to be something better to do.. Well I started some natural alternatives.. Been Juicing fresh fruits and veggies cutting out harmful toxins that are in our foods.. Making fresh veggie soups and rinking the liquids all day.. YOu see My daughters 8th birthday last week and I just felt like I was going to die cant even function with the extreme pain and sores and weakness.. it was sad at Easter I couldn't even sit and enjoy supper with all my kids. Had hit the bed with chest pains and dizzyness.. As the years go by Im worse and worse.. Been on some forums for Lupus and these peeps with Lupus are so sick... So with that said YES after 3 weeks of changing what and how I eat. My lympnodes are gone not swollen anymore and my extreme weekness and fatique are now just tiredsome.. I am able to sit up and enjoy live a little better.. I believe that its gotta be up to me how I wanna live this life.. Lupus Get of my back.. LadyAdena:o Thank you for listening to me... I feel alone here sometimes even though there are lots around me to help me.. I still feel alone..Hello my name is Elton. My mother was diagnosed with lupos over ten years ago. Due to that have been doing very extensive health research. Out of all the research I did I found that 90% percent of illnesses are caused by our diet. Just writing to let you know that you are on the right path. If you any comments for me my yahoo is logic4058@yahoo.com God bless.....
    Anonymous 42789 Replies
    • October 14, 2007
    • 02:07 PM
    • 0
    Flag this Response
  • I am a man with lupus (my 2nd time of being diagnosed) and have been extremely ill for a number of years. I had been misdiagnosed and when they finally figured what was wrong they did what they could. A coctail of drugs and 9 years later, I have lost my job, cannot find work and suffer a variety of symptoms akin to lupus sufferers. I had a spell in a wheelchair when I couldn't walk for 7 months, I have had my knees drained twice and now, I suffer from hip-joints where the "ball and socket" are slowing crumbling and causing me intolerable pain. I try to be cheerful as everyday is a new battle with the symptombs of lupusand there is no let-up as to what it can do. Varying my diet and eating certain foods help but for a short-time. Having an enlargened heart limits what physical activity I am able to perform but despite suffering a variety of ailments, I'm able to live an active but, limited lifeand am able to laugh and not lose my sense of humour as there are worse off than myself and will do my utmost to try and make others happy.
    Anonymous 42789 Replies Flag this Response
  • LadyAdena-you are not alone. I was too misdiagnosed since 1992 (low white blood cells was the indicator). I was diagnosed with Lupus February 17, 2010. I could not move once I fell asleep. I could not sleep on my right side because I also had pluerisy twice, within 2 weeks of the first. My entire body was inflammed. Similar to you, I could not eat. I could only eat rice and eggs, some soups. I don't know if you believe in God, but I do. I would not be alive today if it had not been for the grace of God. I was able to get dress and drive myself to Urgent Care when the second episode of pluerisy occurred. I also drove myself to the hospital to be admitted. Prayed all the way to Providence Hospital because I knew if I made it to this hospital, I would be alright. My doctor was my angel. He diagnosed me within 2 days. I am praying for you and all of us who have lupus. I have tears in my eyes thinking about all of us suffering from this horrible disease. God is able. Missed diagnosed for years and years and so sick with extreme fatigue, pain, stomach problems.. Lets start in 1992 Crohns they said or irritable bowel syndrom...That seemed to get better cause I cut out the carbs and ate protien.... Lived with extreme fatigue and pain for years and years just got so bad this past year.... In Sept 2004 I was so sick I went to the doctors and was sent to take some blood tests a week later the doctor called and said he need to see me right away. When I got there he said that my blood counts were so low he was amazed that I was not dead he looked at me and said that I was extremely sick and that my blood counts were so low that the pathologist called him and said that this lady is extremely sick and he was sending my blood out to be tested for Lukemia.. Blood counts were at 80 and normal is above 120.... Lukemia test came back negative.. The reason I went to the doctors in the first place was because I had these sores all over the top of my head. There were about 20 and they were bleeding and sore and never seemed to heal... They were causeing extreme pain and headaches.. I was then sent to a dermitologist and perscribed steriod lotion to put on. and Antibiotics... Neadless to say I have been on antibiotics for 3 years straight because these lessions on my head have been spreading to my face neck and back.. The antibiotics have help for the few weeks I used them but about two weeks later the lessions became so sore and red all over again.. As of Feb 2006 I was hospitalized over and over again with my Lymphnodes so swollen in my throat and neck and back of my head that they tested me for Non-Hodgkins Lymphoma and the doctors suspected that is what I am developing but the anitbiotics have made them go away and cancer doesn't get better with anitbiotics one dr said.. I have choked on my foods and been so sick and as of Feb of 2007 my chest has been hurting so bad that it feels I cant breath.. Drs in emergency said it was around my heart and lungs and it was called pleursy and that is a symptom of Lupus.. well they perscribed me anti- inflamitories and to take them as It hurts.. So I have another symptom that has gotten worse and worse and Now I know it is Lupus... So There is now cure.. My body has taken it upon itself to attack itself..and kill by inflamation... There has to be something better to do.. Well I started some natural alternatives.. Been Juicing fresh fruits and veggies cutting out harmful toxins that are in our foods.. Making fresh veggie soups and rinking the liquids all day.. YOu see My daughters 8th birthday last week and I just felt like I was going to die cant even function with the extreme pain and sores and weakness.. it was sad at Easter I couldn't even sit and enjoy supper with all my kids. Had hit the bed with chest pains and dizzyness.. As the years go by Im worse and worse.. Been on some forums for Lupus and these peeps with Lupus are so sick... So with that said YES after 3 weeks of changing what and how I eat. My lympnodes are gone not swollen anymore and my extreme weekness and fatique are now just tiredsome.. I am able to sit up and enjoy live a little better.. I believe that its gotta be up to me how I wanna live this life.. Lupus Get of my back.. LadyAdena:o Thank you for listening to me... I feel alone here sometimes even though there are lots around me to help me.. I still feel alone..
    Anonymous 42789 Replies
    • October 7, 2010
    • 07:46 AM
    • 0
    Flag this Response
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