Discussions By Condition: I cannot get a diagnosis.

kidney infection, osteopeonia, prediabetes,....WHAT???

Posted In: I cannot get a diagnosis. 24 Replies
  • Posted By: celtzcastle
  • September 1, 2007
  • 08:42 AM

Here are all of my diagnoses and symptoms (in chronological order) from age 14 til age 21:

mononucleosis, Graves Disease, ideopathic autoimmune disease, chronic cholecystitis (inflammmed gallbladder, no stones; it had to be removed), fibromyelgia, IBS (constipation), edema, prediabetes, PCOS (severe acne, no menstruation, but no cysts visible in ultrasound), alopecia, frequent urinary tract infections (culture showed streptococcus A), fracture of right distal fibula, non-union fracture (right distal fibula), IBS (diarrhea), nauseau osteopoenia, chronic kidney pain

I have low lipids (LDL 30, HDL 70), low blood pressure (80/50), low body temperature (96 degrees F) and a BMI of 20. I have always been thin. Food-wise, I have been a "health nut" since age 16. I do upper body strength training every other day with 10 pound weights. I walk every day; I would like to run but I recently had ankle surgery to fix the non-union.

I take lots of medicine, including synthroid because they destroyed part of my thyroid to fix the Graves. I don't think my list of health problems makes sense.

I'm sick and frustrated :(. Can anyone make sense of my disease list?

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24 Replies:

  • Here are all of my diagnoses and symptoms (in chronological order) from age 14 til age 21: mononucleosis, Graves Disease, ideopathic autoimmune disease, chronic cholecystitis (inflammmed gallbladder, no stones; it had to be removed), fibromyelgia, IBS (constipation), edema, prediabetes, PCOS (severe acne, no menstruation, but no cysts visible in ultrasound), alopecia, frequent urinary tract infections (culture showed streptococcus A), fracture of right distal fibula, non-union fracture (right distal fibula), IBS (diarrhea), nauseau osteopoenia, chronic kidney pain I have low lipids (LDL 30, HDL 70), low blood pressure (80/50), low body temperature (96 degrees F) and a BMI of 20. I have always been thin. Food-wise, I have been a "health nut" since age 16. I do upper body strength training every other day with 10 pound weights. I walk every day; I would like to run but I recently had ankle surgery to fix the non-union. I take lots of medicine, including synthroid because they destroyed part of my thyroid to fix the Graves. I don't think my list of health problems makes sense. I'm sick and frustrated :(. Can anyone make sense of my disease list? Wow, certainly a lot of things going on with you...how old are you now? Do you still have amenorrhea (no periods)? Did you ever start menstruating? Did your illness start after a bout of mono? Any other history of trauma/injury/accidents/abuse? Please list ALL of your medications, including birth control, if any, on your next post. Have you ever taken Avelox or a fluoraquinalone? Are you taking any supplements? If so, please also include them. Best wishesDOM
    acuann 3080 Replies
    • September 1, 2007
    • 04:34 PM
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  • I'm 21 now. Medications: synthroid (50 mcg), Yaz, spironolactone (100 mg), Glucophage (1500 mg), plaquenil (400 mg), Lexapro (5 mg)Supplements: Bile acids, Garden of Life "Primal Defense Ultra" (Saccharomyces boulardii, L. plantarum, Bacillus subtilis, L. paracasei, B. longum, L. brevis, B. bifidum, B. breve, B. lactis, L. acidophilus, L. casei, L. rhamnosus, L. salivarius; L=Lactobacillus, B=Bifidobacterium), Garden of Life "Living Multi," iron, GTF ("glucose tolerance factor") chromium, zinc, alpha-lipoic acid (200 mg), vitamin E (400 IU).Since the Primal Defense Ultra helped me so much, I decided to give Garden of Life's "FYI" ( http://www.gardenoflife.com/detail_fyi.shtml ) and "RM-10" ( http://www.gardenoflife.com/detail_rm10.shtml ) a try; I would like to discontinue the Plaquenil.Also, I take 3 tsp of cold pressed cod liver oil a day; this provides EPA and DHA, and also 300% DV retinol and 150% DV vitamin D. Yes, my health problems seem to have started after a bout with mono, although I developed severe acne a year before I got mono. A dermatologist treated my skin with Benzaclin, retinoid cream, and minocycline taken orally. As a matter of fact, I took minocycline twice a day every day from age 13 til age 18, and I suspect this took a toll on my health. I started menstruating when I was almost 15. Eventually, my doctor put me on Yasmin to regulate my periods. I stopped all medication but Plaquenil when I started college; I went nine months without a period and developed severe acne. Doctors ordered blood tests, and I was diagnosed with PCOS and prediabetes. I went back on Yasmin, and I started having periods again. I also used Accutane that summer, and it helped a lot. My face still breaks out every spring and clears up in the fall, which is kind of odd, but the breakouts aren't as severe. The sun makes my skin worse. My mom thinks the breakouts look more like a rash than acne. My rheumatologist also suspects that my skin problems aren't acne, but I don't agree because a low-glycemic-load diet improves it; the cod liver oil, which contains lots of retinol, has also made dramatic improvements. Right now I barely have any acne; I have maybe 5-10 comedones (whiteheads) and a few blackheads.My doctor switched me to Yaz this summer because I was having breakthrough bleeding on the Yasmin. I'm still having breakthrough bleeding.The hair thinning coincided with the kidney infection last year. It may have been related to weight loss. It is getting thicker now.
    celtzcastle 16 Replies
    • September 1, 2007
    • 08:21 PM
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  • I wrote a longer reply but a "modulator"? has to look at it before it can be posted, so I'll right another (shorter) reply. Medication: synthroid (50 mcg), Yaz, spironolactone (100 mg), Glucophage (1500 mg), Plaquenil (400 mg), Lexapro (5 mg). Supplements: bile acid; Garden of Life "Primal Defense Ultra" ( http://www.gardenoflife.com/detail_primal_defense_ultra.shtml ), "FYI" ( http://www.gardenoflife.com/detail_fyi.shtml ), and "RM-10" (http://www.gardenoflife.com/detail_rm10.shtml); zinc, GTF ("glucose tolerance factor") chromium, iron, alpha-lipoic acid (200 mg), vitamin E (400 IU); and 3 tsp cod liver oil daily, which provides EPA, DHA, 300% DV retinol, 150% DV vitamin D. I started menstruating when I was almost 15 and stopped when I was 18 after discontinuing Yasmin. I take Yaz now and have periods, and also annoying "breakthrough bleeding." Yes, most of my problems started after mono (age 14), except I had acne when I was 13. I'm 21 now. I don't know what "Avelox or a fluoraquinalone" are.
    celtzcastle 16 Replies
    • September 1, 2007
    • 08:47 PM
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  • Do moderators look at posts if they are too long?
    celtzcastle 16 Replies
    • September 1, 2007
    • 08:48 PM
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  • Brevity is not my strong point.Medication: synthroid (50 mcg), Yaz, spironolactone (100 mg), Glucophage (1500 mg), Plaquenil (400 mg), Lexapro (5 mg)
    celtzcastle 16 Replies
    • September 1, 2007
    • 08:50 PM
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  • I have like three redundant posts that have to be looked at by a moderator...I don't know what length to make them so they are posted automatically.
    celtzcastle 16 Replies
    • September 1, 2007
    • 09:00 PM
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  • I'm 21 now. Medications: synthroid (50 mcg), Yaz, spironolactone (100 mg), Glucophage (1500 mg), plaquenil (400 mg), Lexapro (5 mg) Supplements: Bile acids, Garden of Life "Primal Defense Ultra" (Saccharomyces boulardii, L. plantarum, Bacillus subtilis, L. paracasei, B. longum, L. brevis, B. bifidum, B. breve, B. lactis, L. acidophilus, L. casei, L. rhamnosus, L. salivarius; L=Lactobacillus, B=Bifidobacterium), Garden of Life "Living Multi," iron, GTF ("glucose tolerance factor") chromium, zinc, alpha-lipoic acid (200 mg), vitamin E (400 IU). Since the Primal Defense Ultra helped me so much, I decided to give Garden of Life's "FYI" ( http://www.gardenoflife.com/detail_fyi.shtml ) and "RM-10" ( http://www.gardenoflife.com/detail_rm10.shtml ) a try; I would like to discontinue the Plaquenil. Also, I take 3 tsp of cold pressed cod liver oil a day; this provides EPA and DHA, and also 300% DV retinol and 150% DV vitamin D. Yes, my health problems seem to have started after a bout with mono, although I developed severe acne a year before I got mono. A dermatologist treated my skin with Benzaclin, retinoid cream, and minocycline taken orally. As a matter of fact, I took minocycline twice a day every day from age 13 til age 18, and I suspect this took a toll on my health. I started menstruating when I was almost 15. Eventually, my doctor put me on Yasmin to regulate my periods. I stopped all medication but Plaquenil when I started college; I went nine months without a period and developed severe acne. Doctors ordered blood tests, and I was diagnosed with PCOS and prediabetes. I went back on Yasmin, and I started having periods again. I also used Accutane that summer, and it helped a lot. My face still breaks out every spring and clears up in the fall, which is kind of odd, but the breakouts aren't as severe. The sun makes my skin worse. My mom thinks the breakouts look more like a rash than acne. My rheumatologist also suspects that my skin problems aren't acne, but I don't agree because a low-glycemic-load diet improves it; the cod liver oil, which contains lots of retinol, has also made dramatic improvements. Right now I barely have any acne; I have maybe 5-10 comedones (whiteheads) and a few blackheads. My doctor switched me to Yaz this summer because I was having breakthrough bleeding on the Yasmin. I'm still having breakthrough bleeding. The hair thinning coincided with the kidney infection last year. It may have been related to weight loss. It is getting thicker now. You need to be aware that the vitamin formula you are taking has herbs that will cause some of your problems. For example the ***g Quai that is in your vitamin is known to lower blood pressure. After looking at the ingredients in in these items that you are taking I need to ask how long have you been taking them and what is the timing of your taking them and the symptoms you have. The ingredients that I see listed I would NEVER recommend a young woman take due to adverse health risks associated with them. This of course is just my opinion. It is obvious from your first posting that you have suffered from nutritional issues. What I tell my clients is that if you are taking a supplement and your symptoms don't improve or disappear then they are not doing you any good. The fact that you are still having symptoms indicates that the vitamins are not helping you. You should cnsider a different brand. nutritionist:)
    nutritionist 14 Replies
    • September 2, 2007
    • 03:09 AM
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  • I have like three redundant posts that have to be looked at by a moderator...I don't know what length to make them so they are posted automatically.It doesn't matter how long or short your post is. Share whatever you need to.I believe you can delete your post if you don't wish to keep it posted.
    Anonymous 42789 Replies
    • September 2, 2007
    • 03:20 AM
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  • You need to be aware that the vitamin formula you are taking has herbs that will cause some of your problems. For example the ***g Quai that is in your vitamin is known to lower blood pressure. After looking at the ingredients in in these items that you are taking I need to ask how long have you been taking them and what is the timing of your taking them and the symptoms you have. The ingredients that I see listed I would NEVER recommend a young woman take due to adverse health risks associated with them. This of course is just my opinion. It is obvious from your first posting that you have suffered from nutritional issues. What I tell my clients is that if you are taking a supplement and your symptoms don't improve or disappear then they are not doing you any good. The fact that you are still having symptoms indicates that the vitamins are not helping you. You should cnsider a different brand. nutritionist:)I started taking the vitamins about a month ago. The Primal Defense Ultra basically cured my IBS, so I thought I'd give some of the brand's other products a try. The cod liver oil is also put out by Garden of Life, and it has improved my complexion dramatically. My blood pressure has always been low, so I can't blame it on the vitamins. The FYI and RM-10 have undergone placebo-controlled clinical studies. I am taking those and weaning off of the Plaquenil. The Plaquenil has cured me of my joint pain, but I am having trouble with night time vision and my opthamologist blames Plaquenil.Something else that is really disturbing is my "scatter-brainedness." Luckily I chose a major that does not require a fantastic memory (physics :p), but it requires a significant amount of concentration, which I do not have right now. I keep falling asleep. The Lexapro helps some, but if my brain keeps functioning as poorly as it has been, I will not make it through the semester...
    celtzcastle 16 Replies
    • September 2, 2007
    • 06:32 AM
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  • It doesn't matter how long or short your post is. Share whatever you need to.I believe you can delete your post if you don't wish to keep it posted.In order to delete them, a little icon that looks like a pair of scissors needs to appear, right? I don't see the icon and can't figure out how to delete them.
    celtzcastle 16 Replies
    • September 2, 2007
    • 06:38 AM
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  • Have you been diagnosed with Lupus? If not, what is the plaquenil in aid of? You say you are prediabetic, so perhaps steroids will make it worse. However, in many autoimmune diseases steroids are great at shocking your system. Perhaps you could research some of the better research institutions that deal with your symptons. The Mayo Clinic, Johns Hopkins are good place to start.Good Luck!
    Anonymous 42789 Replies
    • September 2, 2007
    • 07:18 AM
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  • Have you been diagnosed with Lupus? If not, what is the plaquenil in aid of? You say you are prediabetic, so perhaps steroids will make it worse. However, in many autoimmune diseases steroids are great at shocking your system. Perhaps you could research some of the better research institutions that deal with your symptons. The Mayo Clinic, Johns Hopkins are good place to start.Good Luck!I might try a research institution, but I'm not entirely confident that it won't be a waste of time....my problems are so varied that I don't think any doctor will find a SINGLE underlying cause and be able to replace the five medications I take with one medication. What I yearn for is QUALITY OF LIFE, and so far, the only medication that has given me this WITHOUT taking anything in return is the synthroid.I am on Plaquenil for an "idiopathic lupus-like autoimmune disease"--in other words, I don't have a really good diagnosis, but the Plaquenil has helped my symptoms tremendously (at a cost--it's hurt my nighttime vision). I was actually on Prednisone for a three month period in 2004, a year prior to my prediabetes diagnosis in 2005. I went on it again in 2005 about a month before I did the glucose tolerance test, but I felt so awful that I discontinued it after a few days. I have heard that prolonged steriod use can cause diabetes; is three months long enough??
    celtzcastle 16 Replies
    • September 3, 2007
    • 04:04 AM
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  • "Having low lipid levels rarely causes a problem, but it may indicate the presence of another disorder. For example, a low cholesterol level may indicate an overactive thyroid gland (hyperthyroidism), anemia, undernutrition, cancer, or impaired absorption of foods from the digestive tract (malabsorption). Therefore, doctors may suggest further evaluation when the total cholesterol is less than 120 mg/dL." Has anyone ever looked at that aspect of your problems? Like celiac problems? and the cod liver oil helps because... Why it helps: Vitamin A, vitamin D, and Omega-3 is found in cod liver oil. (The main difference between other fish oils and cod liver oil is that cod liver oil is high in vitamin D.) Omega-3 helps psoriasis, eczema, and other skin diseases. Omega 3 also helps prevent a whole host of other diseases (heart disease, cancer, depression, arthritis, Alzheimer’s disease, ulcers, diabetes, hyperactivity) It also increases your ability to concentrate as well as your energy level.
    rad-skw 1605 Replies
    • September 3, 2007
    • 10:05 AM
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  • I might try a research institution, but I'm not entirely confident that it won't be a waste of time....my problems are so varied that I don't think any doctor will find a SINGLE underlying cause and be able to replace the five medications I take with one medication. What I yearn for is QUALITY OF LIFE, and so far, the only medication that has given me this WITHOUT taking anything in return is the synthroid. Quality of life is a huge issue - have you considered or tried acupuncture? Sometimes it is the only thing that really helps my autoimmune patients. Also, consider a treatment called NAET - I am just learning this technique, and it has been shown to be very helpful for people with autoimmune diseases. Alternative medicine works best when it is an adjunct to Western allopathic medicine. I NEVER recommend dumping allopathic drugs or treatments. I believe very strongly that the future of Modern medicine will incorporate many different treatment modalities, including acupuncture and naturopathy and others like NAET. I have several general practitioners who recommend me to their patients. Acupuncture can really help - please look into it! Best wishesDOM
    acuann 3080 Replies
    • September 3, 2007
    • 02:28 PM
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  • Dear original poster... I second Accuann's notion of the NAET. Also Bioset is an off chute of NAET. I did Bioset. I had severe chronic fatigue syndrome and fibromyalgia together. My symptom list was vast, as is yours. A woman in this forum recommended it to me and I went.I have had 6 treatments and my symptoms are gone...NO KIDDING. It is a new way of addressing a very old problem. Illness has been around a long time and most of us are convinced that there is only one way to treat it all. After all, it's all we know. I am a nurse of 15 years and was very skeptical but I was desperate. I went and am glad I did. If you let me know what area of the world you live, I will help find someone near you. naet.combioset.net There are testimonial pages as well. This form of medicine works. Best of luck, mommy cat:)
    mommy cat 1654 Replies
    • September 3, 2007
    • 05:50 PM
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  • Quality of life is a huge issue - have you considered or tried acupuncture? Sometimes it is the only thing that really helps my autoimmune patients. Best wishesDOMWhat does acupuncture help with? I don't really have bad joint and muscle pain anymore; that was when I was in my teens. Mostly, I have pain in my kidneys, UTIs, nauseau, fatigue, sleepiness, blurred vision, chills, poor concentration, poor memory, pain or pressure in my head, and swollen glands in my throat and under my arms. Sometimes my hair falls out, but lately it's been OK. And the osteopoenia is something to worry about, but it's not really a symptom because I can't feel it (except when I broke my ankle....THEN I felt it!!) I don't think the symptoms are from high blood sugar because I am very careful with my diet and keep my blood sugar under tight control.
    celtzcastle 16 Replies
    • September 4, 2007
    • 04:44 AM
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  • If you let me know what area of the world you live, I will help find someone near you. I live in the Lansing area of Michigan.Interesting fact: I grew up in a house that is a two minute walk from BioPort Corporation, America's sole producer of the anthrax vaccine. When I was a teenager I became a bit paranoid and thought that the company was doing secret biological experiments on myself and my neighbors, and that was why I was sick...
    celtzcastle 16 Replies
    • September 4, 2007
    • 04:50 AM
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  • Dear celtzcastle...very interesting.:confused: ..I have a lot of information regarding vaccines and many other interesting facts. You may be interested. I am very interested in your story. perhaps we could exchange information... This is the truth. I am a nurse, been one a long time. I was very sick wirh ALL of your symptoms and then some...believe me!! I went to Bioset. My symptoms are gone!!:D Here is the link for Michigan for NAET practicioners. Find one and go get your life back. http://www.naet.com/subscribers/doctorResults.asp?FromQS=1&db=default&uid=default&City=&State=MI&Zip=&Last=&Country=&Status=on&sb=4&view_records=Search You can contact me at bentnoteblues@netscape.net I want to know more...Looking forward to hearing from you soon...mommy cat:)
    mommy cat 1654 Replies
    • September 4, 2007
    • 00:57 PM
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  • What does acupuncture help with? I don't really have bad joint and muscle pain anymore; that was when I was in my teens. Mostly, I have pain in my kidneys, UTIs, nauseau, fatigue, sleepiness, blurred vision, chills, poor concentration, poor memory, pain or pressure in my head, and swollen glands in my throat and under my arms. Sometimes my hair falls out, but lately it's been OK. And the osteopoenia is something to worry about, but it's not really a symptom because I can't feel it (except when I broke my ankle....THEN I felt it!!) I don't think the symptoms are from high blood sugar because I am very careful with my diet and keep my blood sugar under tight control. Acupuncture and Traditional Chinese Medicine is a system of medicine that is over 3000 years old. It is much more than pain manangement! It is good for Upper Respiratory Diseases, GastroIntestinal diseases, GenitoUrinary disorders, Circulatory and Mental/Emotional disorders, and Women's/Men's health. Please consider this form of medicine. If you can find an acupuncturist who is also NAET certified, then that would be great IMO. Also, ask the practitioner if they are NCCAOM certified in Chinese Herbology, as this requires further training and they would be better able to help you. Best wishesDOM
    acuann 3080 Replies
    • September 4, 2007
    • 04:36 PM
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  • Dear celtzcastle...very interesting.:confused: ..I have a lot of information regarding vaccines and many other interesting facts. You may be interested. I am very interested in your story. I've also worked with lots of toxic stuff, though, and the direct contact I've had with chemicals and biological hazards has probably been worse than any sort of negligible contact with stuff from Bioport. I worked in a chemistry lab my freshman and sophomore year, so I worked with lots of toxic solvents like benzene, toluene, acetone, acetonitrile, ether, and the list goes on and on. One time a condenser broke and I got benzene on my bare skin. Also, I worked with heavy metal salts. And I analyzed some of the "organic attempts" with NMR, so I was around some pretty intense electromagnetic fields (if you held up your keys around the machine they would pull towards it). Also, we used x-ray crystallography to "look at" our new hybrid crystals, but the machine had safety doors on it so I don't think I was exposed to any x-ray radiation. Being ill has prevented me from continuing to be a part of the research group, because I do not have the time (I would need to be able to devote 6-10 hours per week, and I already work as an undergrad TA).As a sophomore, I was also doing independent research with Aspergillus niger, a toxic fungus. As I junior, I attempted to develop a novel in-situ mutation assay using PCR and gel electrophoresis, and so I had to culture E. coli in order to harvest its DNA (E. coli genomic DNA is easy to work with).This year I will be working with Picornoviruses--more specifically mengovirus. It is supervised research and I already talked to the supervising professor, and she said that the viruses have been deactivated by messing with their capsids, so I should be fine. And because I am double majoring, I have a couple more years left, so I hope to get in some physics research as well, which will undoubtedly involve working around a particle accelerator, though I'm guessing this is probably much safer than the chemical and biological stuff I've been working with.I probably should have mentioned this stuff before, but I was sick before college so I don't think the research has caused my health problems, and there are lots of people who do research and are perfectly fine.
    celtzcastle 16 Replies
    • September 6, 2007
    • 02:27 AM
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