Discussions By Condition: I cannot get a diagnosis.

Need help w/ Real life Mystery Diagnosis

Posted In: I cannot get a diagnosis. 17 Replies
  • Posted By: Brandy30
  • January 15, 2007
  • 05:49 PM

I really need some help, I had some of these symptoms for years but my health has begun to deteriorate very rapidly at this point. I've listed all of my symptoms below & tests that have been done.

early March 2006 - kidney infection 10 months ago and continued kidney pain, mouth gets dry w/ pain (had cat-scan of abdomen & X-rays)
lost 1/2 inch in height, this past year or two (was 5’9, now 5’ 8 ½)
since age 21 – headaches (worse since July 2006)
3 years - joint pain (left elbow, neck & back, right foot, right knee, right wrist)
2 years – almost continuous hairloss (off & on 7 years, since 1st pregnancy)
Dec 2001 – hospitalized for severe otitus media, pain in ears off & on ever since (had itching for 1 month prior to infection)
May 2005 - off & on pins & needles sensation all over
August 2005 – goiter (thyroid & calcium levels normal, no antibodies)
late March 2006 – asthma
early April 2006 – became hoarse and felt like throat was closing shut (went to urgent care & was prescribed steroids)
June 2006 - abnormal estrogen ratio
mid July 2006 - strange sinus infection while on progesterone w/ nasal ulcers & cold sores
July 2006 - osteoarthritis developed in rt. knee while taking steroids
July 2006 - osteoarthritis in lower back
1 year - dizzy spells
vaginal infections & boils & swelling with 2nd pregnancy (2004) & off & on since
2 years - recurrent bacterial infections (sinus, ear, staff)
1 year - ringing in ears
1 year - pain in rt. foot
6 months - numbness in toes in rt. foot
6 months - leg cramps
3 months - pain in lymphnodes under arms
3 months - swelling in hands & feet & sometimes around eyes
3 months - vibrating sensations in feet
2 months - breast milk came in
2 months ago - metallic taste in mouth (while on antibiotics for staff infection in scalp & for a little while after)
2 months – numb sensation in rt. arm
3 years - some fatigue, comes & goes
6 years - chest pain (negative EKG & chest X-ray)
1 year - skin changes; ruddiness, dehydrated, bumps, break-outs, looks old
6 years - swollen gums
off & on for 2-3 years – glossitis
6 months – blurry patches in vision
turning nose (9 months ago)
a couple times have become suddenly tan
gets worse with increased hormones; thyroid, birth control pill, progesterone cream, pregnancy, nursing

Tests done: CBC read by pathologist, SED rate, CAT-scan of head Nov. 2002 & August 2005, CAT-scan of abdomen, X-rays of knee, chest & lower back (showed asthma, osteoarthritis in lower back & rt. knee), kidney & liver functions – June 2006, cholesterol, calcium levels, thyroid hormone, thyroid antibodies, celiac disease, adrenal test, ANCA, Huntington's Chorea gene mutation, estrone, estrodial, progesterone, testosterone levels (estrogen levels were at a strange ratio & one was extremely high), tests for lupus & RA in Dec 2002 or Jan 2003, Allergy testing for indoor, outdoor, food, MSG & hormone allergies (Allergic to dogs, cats & dust mites and had asthma), psych evaluation & 3 months of therapy (normal), put CO2 detector in house

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17 Replies:

  • Have you been treated for the hormone imbalance? If so, have you recently been retested? Some of the stuff sounds related to chemical imbalances, such as hairloss, though some of the other stuff sounds autoimmune. I'm not a doctor, and I don't know the names of tests, but if you haven't seen and immunologist and ruled out as many autoimmune diseases as possible, I'd recommend you do so. Best of luck!--Sarah
    deadlysauce 67 Replies
    • January 16, 2007
    • 01:51 AM
    • 0
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  • Thank you for responding. I was treated for the hormone imbalance w/ progesterone, but it make things worse. I go to see a rheumatologist on 1/29. Hopefully I'll get more answers.:)
    Brandy30 8 Replies
    • January 17, 2007
    • 00:12 AM
    • 0
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  • Intestinal Permeability
    Anonymous 42789 Replies
    • January 17, 2007
    • 01:46 AM
    • 0
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  • :) Hello There; i had to stop when i heard that you had a metalic taste in your mouth. If it's possible, it may be a sign of a toxic build up in your system. That would need to be addressed first, before anything else. If you'll allow me i'll try to find a suitible solution, post me back & let me know. As Always, In His Service.;)
    hogndog 426 Replies
    • January 17, 2007
    • 03:43 AM
    • 0
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  • Any help would be greatly appreciated.
    Brandy30 8 Replies
    • January 18, 2007
    • 02:19 PM
    • 0
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  • :) Well Hello There; maybe this will help. I know it has "really" helped me! http://www.omorganics.co/tumeric_article.htm This is, next to my faith in *****t, the best thing that's ever happened to me. Within say about one month, you will feel like a million. As Always, In His Service.;)
    hogndog 426 Replies
    • January 18, 2007
    • 02:40 PM
    • 0
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  • Any help would be greatly appreciated.You have intestinal permeability- that is why you have the symptoms of several different auto immune diseases.
    Anonymous 42789 Replies
    • January 18, 2007
    • 02:43 PM
    • 0
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  • :o OOP'S; Looks like i entered the wrong address, sorry now here is the correct one. http://www.omorganics.com/tumeric_article.htm ;)
    hogndog 426 Replies
    • January 18, 2007
    • 02:49 PM
    • 0
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  • Please visit these websites: www.candidasupport.org and www.wholeapproach.com. Please do the evaluation and saliva tests for candida. Doctors are NOT going to help you with this as they think it's a load of bunk. But it is not. Your steroid use and antibiotic use has ravaged your intestinal flora which has in turn caused leaky gut, low immunity, and all sorts of associated problems. Please check these sites out and see if they ring true for you... I am not saying the cause of all of your problems are due to candida overload, but I am saying that it is contributing and if you can cleanse the candida out of your system you may find a HUGE improvement in your wellbeing. Candida mimics autoimmune disorders and also contributes to hormonal imbalances. I can't stress enough that most western docs think this isn't a problem. If you have someone who will do a stool culture for candida, this will help but there just aren't any definitive tests for candida overload. You must do this on your own! Threelac is one of the best products out there to kill candida. I recommend a TWO Month cleanse minimum. You don't have to go on the candida diet but if you do it will certainly help. NO SUGAR, NO WHITE FLOUR, NO PROCESSED FOODS, NO YEAST, NO ALCOHOL. The whole approach website has a great food list you can print out. Also, you should take a very good quality probiotic to help build your intestinal flora back up. Please try this - you really have nothing to lose and everything to gain!Doctor of Oriental Medicine
    acuann 3080 Replies
    • January 18, 2007
    • 02:55 PM
    • 0
    Flag this Response
  • Please visit these websites: www.candidasupport.org and www.wholeapproach.com. Please do the evaluation and saliva tests for candida. Doctors are NOT going to help you with this as they think it's a load of bunk. But it is not. Your steroid use and antibiotic use has ravaged your intestinal flora which has in turn caused leaky gut, low immunity, and all sorts of associated problems. Please check these sites out and see if they ring true for you... I am not saying the cause of all of your problems are due to candida overload, but I am saying that it is contributing and if you can cleanse the candida out of your system you may find a HUGE improvement in your wellbeing. Candida mimics autoimmune disorders and also contributes to hormonal imbalances. I can't stress enough that most western docs think this isn't a problem. If you have someone who will do a stool culture for candida, this will help but there just aren't any definitive tests for candida overload. You must do this on your own! Threelac is one of the best products out there to kill candida. I recommend a TWO Month cleanse minimum. You don't have to go on the candida diet but if you do it will certainly help. NO SUGAR, NO WHITE FLOUR, NO PROCESSED FOODS, NO YEAST, NO ALCOHOL. The whole approach website has a great food list you can print out. Also, you should take a very good quality probiotic to help build your intestinal flora back up. Please try this - you really have nothing to lose and everything to gain!Doctor of Oriental MedicineYou should post your medical license certificate number every time you post a resonse. You are licensed to practice medicine in the United States, right? If not, you are SERIOUSLY violating the law. It seems that no matter what someone posts about symptoms they have, you say they need to go on the candida diet and or colon cleansing. You then hawk your websites to prey on the despirate hoping to gain financially from their plight. Why don't you take your "medicine show" with yo back to the Orient on the next available non-stop flight!!!!
    Anonymous 42789 Replies Flag this Response
  • Please read the terms of use posted on this website. This is a forum of ideas, and I am not practicing medicine, merely offering up my opinions. You have a right to agree or disagree with my opinions, but there is no need to get nasty about it. I am not "hawking" anything...I have no connection to any of the websites - that's just silly. I am just suggesting they may be helpful. You can live mindfully and look at your life in a wholistic way. Or not. Best wishesDOM
    acuann 3080 Replies Flag this Response
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  • hi acuann, that last unregistered poster sounds an awful lot like a medical close minded doctor to me, i may be wrong but pretty fishy. what does he say, go back to the orient on the next available flight. i will say it again the only releaf of anyking in 10 years of dealing with what ever is wrong with me has come from accupuncture (chinese medicine) and not one single time from all the dozens and dozens of medical doctors i have seen with all their tests have i ever recieved a diagnoses or improvement in my condition. the last neorologist i went to actually told me that i had aches and pains disease, something he made up because he could not find a cause for my muscle weakness. so i think that doctor should have taken the next flight to where ever and given his head a shake, i left his office feeling like an idiot, i wonder how much money he made from that appointment. again just my opinion, i have come to this site because the medical proffession can not help me and have basically come right out and told me that. i am looking outside the box and posters like acuann have some great ideas. maybe one of those ideas will be the right one, who is it hurting to suggest things to try, maybe some money, big deal we are talking about our health and quality of life. i spent $450 for 6 accupunture treatments and my legs stopped aching, sound like a bargain to me, i would have paid a heck of a lot more. jad
    just a dad 116 Replies Flag this Response
  • Thanks for your kind words, Jad. It's too bad that many people are so closed minded about alternative medicine. The Western medical profession is great for certain things, but extremely ineffective for others. There are many paths towards healing, and it is always good to be an informed consumer - glad you have had such good success, and I hope you will continue to feel better each day:) . Best wishesDOM
    acuann 3080 Replies Flag this Response
  • hi acuann, no problem, my only point was that i don't know what is wrong with me and don't know what else to try. my doctors just seem lost, no idea's, diagnosis, no nothing. am i supposed to just sit back like a victim and let this thing take my life away. i can't do that. so i look for answers or at the very least suggestions, i find this site, yourself, eatafruit78, shula, hogndog, and many more have given me some great options to try. maybe none of them will work, i don't know but at least now i feel like i am trying. i have had some improvements as well, no more blood pressure medication, no more previcid, i am calmer, eating better, and so on. so far my muscles have not improved but it is very early in all this new stuff. only time will tell, all i can do is what i can do. jad
    just a dad 116 Replies Flag this Response
  • www.ahummingbirdsguide.com all of your sx are there and then some...good luck...mommy cat
    mommy cat 1654 Replies Flag this Response
  • Sounds a lot like an autoimmune disease. Your symptoms lead very much like systemic lupus erythematosus. 50% of people will develop the charecteristic butterfly rash to the face, however it seems like you are experiencing many of the other symptoms (fatigue, hair loss, rash). Sometimes there are specific antibody tests that your doctor can run to differentiate beween autoimmune diseases. Discuss with your doctor about an ANTI-DOUBLE STRANDED DNA antibody, and an ANTI-SMITH antibody test. These are blood tests that are specific to lupus. There are other factors however. Good luck to you.
    Anonymous 42789 Replies Flag this Response
  • Be careful, Lupus is often confused with ME. so is chronic fatigue, fibromayalgia and epstein Barr...please check out the website above. go to symptoms page first...see how many you have...good luck...mommy cat
    mommy cat 1654 Replies Flag this Response
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