Undiagnosed Auto immune disorder destroying my life.

Posted , 13 users are following.

I have been suffering from an undiagnosed auto immune disorder for almost nine years now. I have seen doctor after doctor and even been to the Mayo Clinic twice with no answers. I have been on at least a dozen medications with no results. The only thing that has kept me going is steroids and they are becoming ineffective. Symptoms are welts (hives),rashes, swelling, itching etc..  it is not an immune deficiency, my immune system seems to be in overdrive. Example: you can take your finger and lightly trace your name on my back and in seconds it looks like you used a red marker but it’s also welted up. I have seen some of the best doctors in my state and neighboring states and nothing. Like I said even the doctors at the Mayo Clinic could give me no answers. They told me the doctor I’m presently seeing is doing as good a job at trying to find an answer as anybody at Mayo could do. Somebody out there has to know what this is. I have researched and researched on my own and I have symptoms from dozens of disorders but nothing ties together. Even medication they give transplant recipients so their bodies won’t reject their transplants have not worked. In other words my immune system is killing me. I have no life except my 14 year old son and I am a single parent. It dominates my whole life. If anybody out there suffers anything like this please let me know. At this point I am just locked in my apartment suffering night and day with my son the only thing keeping me going. I had to give up my job making very good money, had finally made it to where I could tell other people what to do, was valued enough that my company gave me a year to try and find a cure and solution and I only have gotten worse. I have been a prisoner in my apartment for three years now. I would like to join the human race again. If anybody has what I have described I’m open to opinions. Please. Anybody. 

4 likes, 17 replies

Report / Delete

17 Replies

Next
  • Posted

    How unimaginably frustrating. I hope you stick with trying to find the answers. Don't loose hope. Many prayer for a solution to your journey soon! 

    Report / Delete Reply
  • Posted

    Hi larry,

    My heart bleeds for you. I myself have been recently diagnosed and my life has been turned upside down. I too am a single parent with a 13 yr old son and a daughter off at college so the pressure is real. Dermatologist can not determine anything? In your own research, have you found any disorders with similar symptoms. How's your bloodwork and organs...any clues there? Hope there is someone out there to help you. Try not to dwell on whats going on with you and focus on getting some normalacy back into your life. Focus on your little boy and push forward as best you can. Put your life in God's hand and start living again. Something will come up, Im sure of it. I will pray for you tonight. ) Best of luck.

    Report / Delete Reply
  • Posted

    Are you in the Minnesota area? What you are describing sounds more like allergies or hypersensitivities than autoimmune because of the welts, hives, rashes and your immune system in overdrive.However, they are related and intertwined in many people. I have both myself and have had normal blood tests, yet strange reactions to things a good deal of my adult life. Regular doctors don't understand much about this phenomenon, so you need to go to a Doctor trained in CLinical Ecology Look up Clinical Ecologists and "Multiple Chemical Sensitivities" online to get more info on this topic and possible referrals in your area. Since you have been to Mayo, I am assuming you may be in the area around Rochester, MN? There is a excellent clinical ecologist in La Crosse, WI named George Kroker. ( 1-800-950-9740) He could help you figure out what is what and get you on the path to recovery. I have seen him for years and he saved my life when I had many strange symptoms no one could figure out. Good luck!

    Report / Delete Reply
  • Posted

    I have Lupus and APS auto immune bt took a long time to get results 
    Report / Delete Reply
  • Posted

    Sounds like multiple food allergies - have u been tested for food intolerances? If not I would get this done and then do a clean eating regime for a month to c if this helps - anything is worth a try  - good luck 
    Report / Delete Reply
  • Posted

    Same thing happened to me. Even went to the ER. He told me I was getting older and I was fat. No joke. I was desperate. In the end it took me multiple doctors in many different fields and a year or more of my life in agony before I said enough. I went off of every drug. Nothing in my system. Went completely away. I was having a section to an arthritis drug and my cholesterol medication. Hope this helps because I also an a single mother and know exactly what you are going through!!
    Report / Delete Reply
  • Posted

    Section meant reaction :-)
    Report / Delete Reply
  • Posted

    Hi Larry,

    Boy can I relate. I'm 62 and struggled for decades until they found the cause. Yes it is tough but no one ever promised me an easy life so I just keep moving. I raised my sons in this condition while people, even some members of my family thought it was in my head. Right, my head played tricks on me and had me in so much pain I couldn't focus on what I was doing. My youngest son is 13, I can't afford to sit in my house all day, he's watching me. I have to teach him by example rhat even through those tough days we have to keep going. So yes I understand. Medicine has come a long way so you will have to be patient, keep researching, for information and Drs. Over the years I've been seen by many Drs, you probably have too but have you been seen by a rheumatologist? Or an Immunologist?  I feel for you but I feel worse for your son, he has no control over your lives. For your son's sake keep pushing those Drs., and get out of your apartment. Let's be greatful for what we CAN do. Let's just keep on going. I hope some one comes along and has some real good advice that can help you. Don't ever give up hope, your son is watching you.  God be with you.

    Fran

    CKD  stage 4 egfr 23, diabetes, Lupus, Sjogrens syndrome, Raynaud's, Polymyositis, abdominal aortic aneurysm, rheumatoid arthritis.  Won't even talk about symptoms like highBP, pain,etc.

    Report / Delete Reply
  • Posted

    Hi Larry,

    I got your points and am the one pretty much 100% same issues as like you and suffered for 15yrs,

    Now its all ends up we people have our solutions and you can't get a solution from any doctors around the world,

    After 15yrs back Am not just recovered I just ran successfully in 8km mini marathon in Bahrain , .

    So for got everything, you don't need any kind of doctors or medications,

    I can promise here by if you believe me I will make you runaway not only from your apartment, you will see as like me ,,,,, pls follow me and get well as like me , without spending single

    Dollar you will be rocking,,,,

    I don't know how to educate and bring awareness around the people in world who suffers as like.

    Count your days you will be on your mark on human race to excel,,,

    Report / Delete Reply
    • Posted

      You can start to inform people right here. So tell us how we can feel better without taking tons of medicine given to us from our Drs. I could really stand to find a natural alternative.
      Report / Delete Reply
    • Posted

      Dear Fran

      Am not a doctor but am son of doctor, even though my father can't find a remedies for me,but he was been at peace in heaven.

      From where he left their by I fought hard and harder to find myself a solution.

      In our bodies a hundreds of trillions of immune cells presented when these cells start attacking our own bodies their by we getting pain and damage in tissues and bones .

      The real fact is we don't knew why and when it attacking and this phase of non linear symptoms is been called by doctor as autoimmune disease or in any other names according to their doctors text books,

      All you need to realize the fact, and you know what all the medical parameters suggest for especially western medicine(holopathy) homeopathy,ayurvedha,chinise or any comercial medicine trying to May us only three things

      1) cure rarely

      2)comfort mostly

      3,) always console

      Modern medicines and the doctor's will trying tried make us comfort with steroids and after some periods of hiking dosage it will be also worthless.

      You have to be very very serious and must needed knowledge over medical industries, its been biggest than any other industries,.

      Don't go for any kind of medical check up, they have the parameters of normal ranges for everything like blood pressure, sugar level ,cholesterol, everything. Where does this normal ranges arise? Just think twice 40yrs before 110/140 was been called as normal blood pressure

      Now a days 90/120, it's been a corporate mafia investing billions of dollars to keep survey and as like things to publish and do have their business,

      Ok let's come to our point, every six months once we are new born babies because our immune cells were been keeping changes everything six months a new born immune cells can have life span of 6months only.

      When we are not getting into the autoimmune disorders. Our body

      Cells loving other cells inside our body, like a way what ever things we love our cell's also loving the same. imagine a minute I love Frank very much but suddenly if I start to hate Frank then suddenly my body's cells begin under confused cells thinks"we love Frank but why our boss(we) hate Frank" then our cell's start attacking our own bodies we getting damaged and causing pain,

      Remember when you really start hating someone or something , they Will not getting damaged and you only to be damaged by yourself,

      Make a list yourself that you hate very much start loving them if it so difficult then do focus on what you really likes and love to do , then your cells loving at your body and no more doctors or medications,

      Until you feel the relief little. Their by you start reducing the steroids or any other medicine that you swallow to reduce pain , slowly reduce those day by day ,

      Make enthusiasm to be compassionate and we people are having more energy which is not been used in way,

      Autoimmune disorders causing because of something that you don't like to do is the core key of causing this malfunction,

      So here you get up and start your self and don't keep restrictions on eating,

      Don't focus too much on while eating.

      Just make sure the food whatever it could be your favorites

      In the dinner take it between 6-7pm.and keep distance minimum 3hrs before you go for bed,

      Their are several other medical factors that I didn't mentioned which are revealed.

      Make sure

      You eat well

      You s**t well

      You love well

      You won't get any diseases

      Report / Delete Reply
    • Posted

      Thankfully for those who just comes to know about, from my comments it's not about we should completely stay away from modern treatments. Of course we need that, Because when by the time a person in the time of accidental or emergency care. Such situations I or we can't say as like just a yoga or mind set will heal him.

      We strongly grown up on having tremendous faiths over doctors and medical science. But we fail to realize that just a 20% of the world population only needs ICU treatments . The other were we assumed we living by science. Science is been just invited to describe how to live life naturally with nature.

      Whether you are fatty or slim doesn't matter , until you see a consultant. Cholesterol doesn't bring heart attack. We desperately needed of cholesterol , Generally practitioner says after 30 or 35 start eating cholesterol free foods in order to avoid heart disease in future, cholesterol are just not only blocking blood goes to heart, it should have to be stopped actually,because if blood continues to go restless into heart, whereas heart can't pump all at a time, and you will be getting struck causing heart attack because of excess flow of blood to the heart.

      Now a days from every aspects of food starts from milk , cheese , oil, etc we may see label of fat free, cholesterol free, low sodium, or etc,.

      because we felled in the corporate business development strategy that makes our life tragedy.

      Cholesterol are boosting up immune cells, if we stop eating cholesterol we become immune patients as well as heart disease soon after.

      Report / Delete Reply

Join this discussion or start a new one?

New discussion Reply

Report or request deletion

Thanks for your help!

We want the forums to be a useful resource for our users but it is important to remember that the forums are not moderated or reviewed by doctors and so you should not rely on opinions or advice given by other users in respect of any healthcare matters. Always speak to your doctor before acting and in cases of emergency seek appropriate medical assistance immediately. Use of the forums is subject to our Terms of Use and Privacy Policy and steps will be taken to remove posts identified as being in breach of those terms.

newnav-down newnav-up