Discussions By Condition: I cannot get a diagnosis.

Stick a fork in me- I'm done!

Posted In: I cannot get a diagnosis. 10 Replies
  • Posted By: bellevue
  • February 29, 2008
  • 07:54 PM

I'm a 42 year old female who has been going through a special type of medical ***l for the last 18 months or so. After going to many, many doctors (better than 10) I am still with out relief. These are my symptoms which started shortly after a hysterectomy for chronic anemia (yes, other options were tried before surgery- none successful. oh, and I'm still anemic): joint pain (especially in my hands and shoulders and hips), raynaud's, incredible fatique, malaise, headaches, bloating, constipation or diarhea (it is either or, no in between), weight gain, stomach pain, palpitations and a horrible rash that burns, itches and bleeds (the burning and itching is almost unbearable at times) on my lower legs, both hips up each side until mid-ribcage, one shoulder and side of neck and the opposite arm. At first I was diagnosed with SLE and put on prednisone but when I move the new doc said I didn't have that and took me off the prednisone. While I was on it I felt a lot better and the rash went away. It came back on my legs after being taken off the prednisone and has now spread to every where else.

My gp just keeps telling me that she will send me to dermatology and those poor guys are at loss (I started going to the dermatology clinic in August 07 and have gone about every 2 weeks and have been on 20 different meds to include topical antibiotics, oral antibiotics, topical antifungal, oral antifungals, steriod creams, injections, biopsy (general), multiple scrapings, medicated oils, and odd directions like sleeping with plastic wrap over my outbreaks).

Now I am waiting for a date for further patch testing and doing another course of oral antibiotics- for what, I don't know.

I am going crazy! I am getting very depressed. My kids (all 4 of them) and my husband don't understand how much I hurt and itch all of the time!

Can anyone offer any suggestions???

Thank you!

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10 Replies:

  • I suspect a big part of your problems could be iatrogenic disease, from the doctoring you have received.:eek: Your GI system is out of whack from anti-biotics (everytime you take an antibitoc you alter the bowel flora and other important things like your enzymes. But sometimes anti-biotics are a necessary evil. To get better you will need to find a way to get your digestion issues improved.Probiotics, nutrtional supplements, and digestive enzymes may be helpful. And some meds might be best to discontinue... you will have to work at finding the drugs that could be making you worse. *Don't discontinue anything without consulting a dr though. Please see a GI dr and mention to him also you are getting depressed as it is a symptom of physical GI illness (and he will probably test for porphyria which is an underdiagnosed illness) .If you can find a GI dr into natural remedies when possible that can be nice. What kind of rashes do you get? Has the dr told you? They can indicate what sort of diseases you could have. tdwi:) I'm a 42 year old female who has been going through a special type of medical ***l for the last 18 months or so. After going to many, many doctors (better than 10) I am still with out relief. These are my symptoms which started shortly after a hysterectomy for chronic anemia (yes, other options were tried before surgery- none successful. oh, and I'm still anemic): joint pain (especially in my hands and shoulders and hips), raynaud's, incredible fatique, malaise, headaches, bloating, constipation or diarhea (it is either or, no in between), weight gain, stomach pain, palpitations and a horrible rash that burns, itches and bleeds (the burning and itching is almost unbearable at times) on my lower legs, both hips up each side until mid-ribcage, one shoulder and side of neck and the opposite arm. At first I was diagnosed with SLE and put on prednisone but when I move the new doc said I didn't have that and took me off the prednisone. While I was on it I felt a lot better and the rash went away. It came back on my legs after being taken off the prednisone and has now spread to every where else. My gp just keeps telling me that she will send me to dermatology and those poor guys are at loss (I started going to the dermatology clinic in August 07 and have gone about every 2 weeks and have been on 20 different meds to include topical antibiotics, oral antibiotics, topical antifungal, oral antifungals, steriod creams, injections, biopsy (general), multiple scrapings, medicated oils, and odd directions like sleeping with plastic wrap over my outbreaks). Now I am waiting for a date for further patch testing and doing another course of oral antibiotics- for what, I don't know. I am going crazy! I am getting very depressed. My kids (all 4 of them) and my husband don't understand how much I hurt and itch all of the time! Can anyone offer any suggestions??? Thank you!
    TaylorDeelwithit 382 Replies
    • February 29, 2008
    • 08:11 PM
    • 0
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  • I suspect a big part of your problems could be iatrogenic disease, from the doctoring you have received.:eek: Your GI system is out of whack from anti-biotics (everytime you take an antibitoc you alter the bowel flora and other important things like your enzymes. But sometimes anti-biotics are a necessary evil. To get better you will need to find a way to get your digestion issues improved.Probiotics, nutrtional supplements, and digestive enzymes may be helpful. And some meds might be best to discontinue... you will have to work at finding the drugs that could be making you worse. *Don't discontinue anything without consulting a dr though. Please see a GI dr and mention to him also you are getting depressed as it is a symptom of physical GI illness (and he will probably test for porphyria which is an underdiagnosed illness) .If you can find a GI dr into natural remedies when possible that can be nice. What kind of rashes do you get? Has the dr told you? They can indicate what sort of diseases you could have. tdwi:) This is my idea also, all those drugs over a short time WILL put your system out of wack (and a "short time" for drugs is basicly months to years) so all these medications have most likely brought on NEW symptoms, im not saying you dont have a medical problem but im fairly sure you had original symptoms and im also pretty sure these drugs could manifest those original symptoms into new, worse symptoms hope you get well soon!
    LymeTime 65 Replies
    • February 29, 2008
    • 08:19 PM
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  • Time for a holistic medical approach... I cannot believe they did a hysterectomy for anemia - yikes! Of course you still have it...Did your docs say that you will never be the same again after a hysterectomy? Did you have a full or partial hysterectomy? Sorry you had to go through that!:( It is not unusual to develop autoimmune dysfunction after serious events, such as surgery/illness/injury/etc. I cannot offer you any advice as to what kind of dysfunction you have, but it sounds systemic. Your rash has so far been undiagnosed, correct? They have ruled out staph like MRSA? If not then they should do this asap. What antibiotics were you prescribed? Please know that antibiotics and steroids can cause candida overload, which can cause skin itching and rash symptoms as well as fatigue, bowel troubles, headaches, and malaise. Western MD's treat candida VERY POORLY IME. It is much better to find a good naturopath, NAET practitioner, Oriental Medical doc, etc to help you if you have candida overload. Please research candida online - visit www.candidasupport.org, and www.wholeapproach.com . These two websites are very informative. Candida is a bear and hard to get rid of. Threelac is a good product to use, as well as oregano oil, garlic, black walnut, pau d'arco, grapefruit seed extract and others. AS THE OTHER POSTER SAID PLEASE GET A GOOD QUALITY PROBIOTIC AND TAKE A HIGH DOSE OF THIS DAILY! This is extremely important and should help get your bowels back in order, as well as boost your immune system. If you are tired of the rollercoaster of antibiotics/steroids and no answers from your docs, please consider finding a holistic doc to help you. They can really make a difference! Best wishesDOM
    acuann 3080 Replies
    • February 29, 2008
    • 08:27 PM
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  • Thanks for your replies! I want to clarify that I had all of the symptoms shortly after the hysterectomy and the only "new" symptom is that rash keeps spreading. Also, the only medications I am on currently are an antibiotic and nexium (which I have been on for almost 2 years). My husband is in the Army and we are stationed near a major Army hospital here. My main dermatologist is still in his residency and so he always has to bring in someone more senior to look- and they all tell me that they have no idea what it is. They guess and try to stick to the catchall of atopic dermatitis. At my last appointment my derm brought in the head of the clinic, who briefly looked at and said I had dry skin and I about had a break down. After the 2 doctors went around in circles about my history I ended up with a 30 day script for clindamycin! I just don't get it.
    bellevue 3 Replies
    • February 29, 2008
    • 08:35 PM
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  • Thanks for your replies! I want to clarify that I had all of the symptoms shortly after the hysterectomy and the only "new" symptom is that rash keeps spreading. Also, the only medications I am on currently are an antibiotic and nexium (which I have been on for almost 2 years). My husband is in the Army and we are stationed near a major Army hospital here. My main dermatologist is still in his residency and so he always has to bring in someone more senior to look- and they all tell me that they have no idea what it is. They guess and try to stick to the catchall of atopic dermatitis. At my last appointment my derm brought in the head of the clinic, who briefly looked at and said I had dry skin and I about had a break down. After the 2 doctors went around in circles about my history I ended up with a 30 day script for clindamycin! I just don't get it. Ah, Army hospital...I am sorry you are stuck with the Army medical staff...very inadequate and incompetent IMO. I am speaking generally - I am sure there are some good docs out there but mostly there is understaffing and underfunding...don't get me started on the VA hospitals... 30 DAY SUPPLY OF CLINDAMYACIN - yikes again:eek:. Please understand that this antibiotic can cause a clostridium difficile bacterial infection that can in turn cause pseudomembaneous colitis - severe diarrhea/IBS symptoms from ***l. I know this because I had this, and thought I was going to die! If you have severe diarhhea/cramping etc...you will need to get tested for c difficile and you need to specifically ask for this as it is not done in a routine stool test. Western tx includes MORE antibiotics, which further cause impairment. Hopefully you won't have this, but if you do you will need to get sacchromyces boulardii to treat it - this is very effective. I hope you research candida! Best wishesDOM
    acuann 3080 Replies
    • February 29, 2008
    • 08:50 PM
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  • I suspect the anti-biotics are playing a huge role in your discomfort....you should look into some ways to minimize the amounts of anti-biotics you use in your life. Otherwise, as you grow older you will find you will continue to have increasing health problems. I cant believe you got prescribed clindamycin for dry skin! Some of the doctors in your life have done you a huge dis-service it seems. You probably have at least some yeast overgrowth going on, and could have bacteria overgrowth in your gut such a c. difficile that are playing havock with you. Even things like joint pains can be caused by too many bad bugs growing in your gut. I do think it would be worth your while to find a dr more into preventative medicine and not into pushing pills. You need less and not more pills before you get sicker. I was there like you are now and took lots of medicines. Got infections and had antibiotics. These were ******n my liver but I did not know that. Also screwed up the flora and such of my gut. I have difficulty with digesting foods now also. Little did I know I also have a genetic problem (porphyria)and it got triggered by many of the meds I was on.... making me sicker yet. :eek: A viscious cycle eventually gets going when you take many meds.... you end up needing meds to deal with the side effects and complications of the first meds. And the more drugs you take... the more your risks of getting sick from a drug go up. Many health problems of the elderly are linked to to iatrogenic disease including over-medicating .:rolleyes: You won't likely get better when you keep adding more drugs to your system; it never works that way. :rolleyes:The goal is to get to the point of health where you don't need so many drugs if any to function. tdwi Some links:http://www.yourmedicaldetective.com/public/335.cfmIatrogenic Disease: The 3rd Most Fatal Disease in the USA http://www.pacifichealthcenter.com/updates/47.aspDoctor-Caused Diseaseexcerpt: One of the most common causes of disease (if not the most common cause) is conventional medical doctors! Sad, but too often true. The medical term coined to describe this problem is iatrogenic disease, from the Greek "iatros" meaning physician and "genesis" meaning origin. Thus we have doctor-caused disease. Specifically, iatrogenic disease is defined as:Any adverse reaction, either major or minor, to a medical or surgical treatment. http://www.whale.to/a/dean.html Death By Medicine; tons of links on Iatrogenic Disease on this page... http://www.whale.to/a/null9.html#Is_American_Medicine_Working_ Is American Medicine Working? http://www.whale.to/a/null9.html Tons of links on Iatrogenic Diseases also here Thanks for your replies! I want to clarify that I had all of the symptoms shortly after the hysterectomy and the only "new" symptom is that rash keeps spreading. Also, the only medications I am on currently are an antibiotic and nexium (which I have been on for almost 2 years). My husband is in the Army and we are stationed near a major Army hospital here. My main dermatologist is still in his residency and so he always has to bring in someone more senior to look- and they all tell me that they have no idea what it is. They guess and try to stick to the catchall of atopic dermatitis. At my last appointment my derm brought in the head of the clinic, who briefly looked at and said I had dry skin and I about had a break down. After the 2 doctors went around in circles about my history I ended up with a 30 day script for clindamycin! I just don't get it.
    TaylorDeelwithit 382 Replies
    • February 29, 2008
    • 08:54 PM
    • 0
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  • Read this info on Lyme:http://www.quackwatch.com/search/webglimpse.cgi?ID=1&query=Lyme And this on the electromagnetic stuff...http://www.quackwatch.com/search/webglimpse.cgi?ID=1&query=electromagnetic&case=&whole=&lines=&errors=&age=&maxfiles=25&maxlines=20&maxchars=3000&filter=&cache=yes&rankby=DEFAULT :eek: I had my uterus and left ovary removed and became anemic immediately following the surgery - and ever since, my life has been ***l. Two things are going on with me - chronic Lyme and an allergy to /
    TaylorDeelwithit 382 Replies
    • February 29, 2008
    • 09:40 PM
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  • Have they checked you for HLA B27? This might help reveal whether you could have something in the spondyloarthropathy family.Also, have they checked your thyroid function? I mean, not just by checking your thyroid hormones, but by checking thyroid ANTIBODIES? Or a thyroid ultrasound? While this may not explain the rash, it could explain a lot of your other symptoms. I have a rare complication of autoimmune thyroiditis called hashimoto's encephalopathy and it was detected by elevated thyroid antibodies. It improves on steroids.Another thing worth looking into is celiac disease. it can also produce anemia and skin rash, as well as your other symptoms.Well, these are just a few ideas, there's likely more ideas out there.I'm sorry you are going through this. I hope you get answers soon!Best Wishes.
    Anonymous 42789 Replies
    • February 29, 2008
    • 11:06 PM
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  • Have they checked you for HLA B27? This might help reveal whether you could have something in the spondyloarthropathy family. Also, have they checked your thyroid function? I mean, not just by checking your thyroid hormones, but by checking thyroid ANTIBODIES? Or a thyroid ultrasound? While this may not explain the rash, it could explain a lot of your other symptoms. I have a rare complication of autoimmune thyroiditis called hashimoto's encephalopathy and it was detected by elevated thyroid antibodies. It improves on steroids. Another thing worth looking into is celiac disease. it can also produce anemia and skin rash, as well as your other symptoms. Well, these are just a few ideas, there's likely more ideas out there. I'm sorry you are going through this. I hope you get answers soon! Best Wishes. celiac disease is most likely here since the classic rash that occurs because of the disease, bowel disfunction, hard to digest food. please tell us every single detail about any stomach problems and malnutrition ect
    LymeTime 65 Replies
    • February 29, 2008
    • 11:13 PM
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  • I wonder if you have a blood disorder, not just simple anemia. Some thoughts: Henoch-Schonlein Purpura (HSP)http://www.medicinenet.com/henoch-schonlein_purpura/article.htm Fifth Diseasehttp://www.healthatoz.com/healthatoz/Atoz/common/standard/transform.jsp?requestURI=/healthatoz/Atoz/ency/fifth_disease.jsp Aplastic Anemiahttp://www.cnn.com/HEALTH/library/DS/00322.html See a hematologist ASAP.
    aquila 1263 Replies Flag this Response
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