Discussions By Condition: I cannot get a diagnosis.

I want my life back, Desperate

Posted In: I cannot get a diagnosis. 9 Replies
  • Posted By: BigHopes
  • May 10, 2007
  • 08:40 PM

I am desperate. I have suffered with chronic infections, lungs (COPD) sinuses, kidneys, liver, oral, ears, type 2 diabetes (though this went into remission) surgical scars opening for many years (with only a 6 to 11 weeks break from the infections in a year) Two years ago I gained nearly 70lbs in weight in a matter of 6 weeks (always been a good weight) and 8 months later, lost 60lbs in 4 weeks, I was hurling vomit and blood for 4 months with chronic diarrhea and blood, my stomach is now extended and belly button is more to the right side than middle. I had to have an Angioplasty and before this, I was getting electrical shock feelings through out the whole of my body, the worse was my head, one sided. Feet was excruciating, like walking on glass and bone pain in legs was so intense, I would scream like they were just broken. Joint pain all over body started with a vengeance and calcifications started growing all over me. (Fingers and hands look deformed now) Chronic fatigue, especially when I eat and go walking for 10mins is embarrassing, so tired. Also, my muscles are bouncing around like there is a party going on in there, all over my body, this is 24/7 and gets worse on laying down. I was sent to a neurologist, he said I was stressing out and put me on anti-depressants (never took them) not stressed, frustrated I would say. He did nerve tests, MRI, CAT scans and a spinal tap. The spinal tap came back clear. The other tests came back with four lesions and a small mass on the brain, nerve damage and a cyst looking thing near my brain. My family doctor admitted me into the hospital and countless tests were done, my labs were abnormal, wbc was extremely high, CBC was off the wall and the heart factor was abnormal, found a few things wrong with it, but fixable they say. They found a twisted and prolapsed colon that dropped down into my womb cavity (hysterectomy 18yrs ago) the Colon has three abnormal growths on the outside of it and polyps on the inside, Osteoarthritis, DDD and DJD. I had major back surgery 6 years ago for 3 imploded disc's in spinal cord. I went to see an Internal doctor and she said "FIBROMYALGIA"
So I went to see a Rheumatologist and he did some blood work that had never been done and it came back with my Vit-D at a serious low and my potassium at a serious low. It has been a year and a half with all this sickness and pain and abnormal labs.
The arthritis Doctor said to me that they would of found all of this at my autopsy.
The dentist imploded an abscess into my jaw February and my tongue turned green and tastes like I am sucking on tin foil all the time, It is a thick coat of dark green slimy stuff. Antibiotics did not work 6 wk course.
The pain in my cheek bone, eye socket and ear is excruciating and now my left eye is so blurry, I can barely see through it. I am also having speech problems with memory lapses. (5+ months)
Now they are doing surgery to fix the cyst thing on my brain (left side)next week and the other surgeons refuse to do surgery on my colon because of the mass infection in my body. Anti-biotics never work on me and I can not take pain meds (narcotics) A friend of mine, who is a nurse, thinks I have MS and maybe colon cancer. Why wont the doctors help me if I am this sick? I am trying not to give up, but I can not take this no more. Can you please please help? Insight or maybe what I can do to help myself? Thank you in advance. 43 year old female, non-smoking-drinking or substance abuse. I do not take medications only Vit-D replacement and Pottassium replacement. I believe too many medications can make you so much worse and they say I need to be on anti-depressants. :mad:

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9 Replies:

  • Wow...just wow. With all this going on, you'd think that a trained professional might pick up that you had serious problems. The pain in your facial bones could very possibly be due to the abcess. Infection like that, especially once it's advanced, is very likely to spread to bone which can spread to blood and then to the brain. I actually had an uncle who had to have fingers amputated, legs amputated to the knee, and internal organs removed...all because he didn't go to the doctor for a fractured bone in his foot.If your nurse friend IS right and you have a condition that might be impairing your body's natural defenses, your body might not react well to antibiotics, if at all. I'd say a colonoscopy is in order, as well as biopsies on ANY masses found on internal organs. Might also ask for an ultrasound to check your abdominal cavity for less obvious issues. Just remember...your doctors? They work for YOU. Tell them (don't ask) that you want answers and what tests you would like performed. If they're unable to help you, change doctors OR ask for referrals to specialists.Take care, and I hope you can get this all taken care of. Nobody deserves to live in misery.
    Anonymous 42789 Replies Flag this Response
  • Thank you for replying. I did have 2 upper and 3 lower gastro exams done with a camera, but they could not get inside the colon to take biopsys, with the twist and collapse of it. They did an ultrasound and one of those things where they do an enema scan :eek: and that is where they found the 3 huge lumps on the outside of the colon, but no biopsy of them either.I actually had to make an urgent appointment today with the gastric dr for tomorrow morning, as I yet again lost about a half a cup of bright red blood from my bowel. Scared me to death to say the least. So I am not going to leave until he answers and helps me, thats for sure. But again, Thank you so much for caring. I will try and keep you posted.
    BigHopes 7 Replies Flag this Response
  • Thank you, On my way to Gastric Dr this morning....Thank you for caring and I will keep you posted on what he says. Not leaving without an answer though. Thank you again.
    BigHopes 7 Replies Flag this Response
  • Dear Big Hopes...I have them too...please visit www.ahummingbirdsguide.com there is info regarding ME...Hundreds on this site are having symptoms and I'm only trying to help...them all...including myself...I am a nurse and a 38 year old girl who is having SEVERAL, unrelated symptoms that don't follow any patterns...until I found ME...Doctor is testing for it now...already have lab results that correlate...this is serious and I wish you well...Godspeed...mommy cat
    mommy cat 1654 Replies Flag this Response
  • wow, I am sorry for all that you are going through! Has anyone diagnosed the infection you have - staph, MRSA, septicemia, or otherwise? MRSA is directly caused from a hospital or rehab clinic...and it is nasty and antibiotic resistant...did they give you a clear diagnosis on this? Time to try an alternative, integrative approach to your health! Please get yourself to a naturopath, Doctor of Oriental Medicine, or NAET (Nambudripad Allergy Elimination Technique) practitioner. Yes, continue your Western tests and treatments, but realize that they may not be able to help as well as an alternative doc. Find an acupuncturist who is also NCCAOM certified in Chinese Herbology - this would be very beneficial as there are Chinese herbal formulas to treat infection and abcess and pain as well as get you back in balance... To be sure, you seem very, very ill:( . Yet I think that NAET would help you immensely, though it is no "quick fix". NAET is very helpful for all autoimmune diseases, and it sounds like you have at least one going on. I absolutely agree with unregistered - fire your docs if you don't get answers and proper help. But keep in mind that Western Allopathic medicine is limited in its abilities to properly address autoimmune and other "difficult" systemic problems. Please consider trying one of the treatments mentioned above. www.acufinder.com and www.naet.com for more info and to find practitioners near you. Best wishesDOM
    acuann 3080 Replies Flag this Response
  • Dear Big Hopes...please find thread titled "contagious joint pain" please read it...I have already heard from hundreds of people on this site alone who have been to every doctor for every reason and noone can get a diagnosis...including me....My doctor is now testing me for ME...You have several symptoms...like myself that don't follow any pattern...no rhyme or reason....just like so many on this site...look around....see how people are responding to me.............I'm not saying you have it...I'm just saying it's worth a look you, like me, have been through so much already....past few days I've gotten responses from several people saying they have "it"...and so do I...just trying to help...God Bless...mommy cat
    mommy cat 1654 Replies Flag this Response
  • Thank you so much for your help! I really do appreciate it all of it.I finally got some answers on friday.I do have autoimmune disease and they also found a pocket filled with fluid deep beyond my sinus, that has got bigger since January. They are doing GPS brain surgery this friday to try and remove and biopsy it.Then start me on iv antibiotics for 5 days in the hospital to control the infections. I am a little scared, but thanking God for these answers.My colon is severly twisted and collapsed and dropped down into where my womb used to be, the lumps on the outside are Diverticulitis which are infected, along with H-pylori disease. They tested for the bactirium, but that has not come back as yet. I have Vit-D and Vit B-12 deficiency with Hypokalemia, potassium deficiency. Which has so not helped my other organs to function. My nervous system is shot because of the Hypokalemia. That may never go away, but there is hope now and things are finally getting fixed, just in a strange order. I will go and see the NAET also, when I recover from all of this, as I would like to know or see if they can fix the autoimmune disease? That was very interesting, thank you again Acuann and unregistred, you are a great help. Mommy cat, not everyone on here has ME, not trying to be rude....BUT...
    BigHopes 7 Replies Flag this Response
  • Dear Big Hopes...I'm aware not everyone has ME and I didn't take offense at that.just hear me out In the 80's there was an outbreak of ME in the US, LosAngeles hit the hardestMe, my cousin, my sister in law and her sister all have ME sx to varying degrees...I asked when I started figuring this all outMy mother, my cousins mother and my sister in laws mother all have Fibromyalgia...ME is Myalgic EncephalomyelitisI asked my doc if Fibro could be a mild form of ME...there are mild, mod and severe forms of it...He could not rule it out as a possibilityMontel Williams did a show on Tues regarding a "SUDDEN SURGE" of Fibromyalgia in LosAngelesThere are too many coincidenceswaiting for a call from my doc nowwill be following up with my local health dept. this am as well, with an epidemiologist they have on staff...this is not just epidemic...it's pandemic...I've heard back from others in foreign countries as well Again...I know not everyone fits into this but...what if we caught it in the 80's...gave it to our mothers...now they have a milder form called FibroLA had biggest outbreak 20 yrs ago...I was in school 20 years ago...now a big surge in Fibro 20 years later...it all makes sense...Good Luck and Godspeed...mommy cat
    mommy cat 1654 Replies Flag this Response
  • Dear Big Hopes, I am sending you good thoughts and prayers for a speedy recovery from your surgery. While you recover I want to give you a recipe for a rice porridge, which is very fortifying and gentle to the digestion: Take 1 cup organic short grain brown rice to 5 cups pure water. Bring to boil and simmer slowly for 3-5 HOURS. This is very good for the digestion and fortifies the Spleen. Please try this. Also, please get yourself a good quality PROBIOTIC, to help counterbalance the effects of the antibiotic. A probiotic will help rebuild your intestinal flora - you can even insert a capsule anally to give relief from hemorrhoids or fissure. You can get a probiotic at any healthfood store, or online at www.vitacost.com. Best wishesDOM
    acuann 3080 Replies Flag this Response
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