Discussions By Condition: I cannot get a diagnosis.

Many Symptoms, No Diagnosis. Please Help!

Posted In: I cannot get a diagnosis. 4 Replies
  • Posted By: GreenSkittles08
  • June 27, 2009
  • 06:46 AM

Here is a list of symptoms I have. All symptoms have become present within the last 3 years, except for asthma. I have had asthma my whole life. I am looking for answers because any research I have done and doctors I have seen have not been able to diagnosis me with the underlying cause.

-MRSA (several outbreaks, last one was 1 1/2 years ago)
-Severe skin rash on hands and feet (dermatologist refers to as
-Alopecia (total hair loss)
-Urinary Tract Infections
-tingling in hands and feet
-heavy periods
-lack of energy/motivation and often tired

I just got a call from my doctor, informing me that the tests I took most recently all came back negative. These tests included thyroid, autoimmune, anemia, and celiac disease.

All symptoms started to appear about 3 years ago when I had pneumonia. At the same time, I had my first outbreak of MRSA (which appeared in 3 separate places at once) and this is when my hair started to fall out (Alopecia). Currently, I have total hair loss on my head and am beginning to loose my eyebrows and eyelashes.

I am becoming more and more upset about my health problems because I cannot find any answers. I do not know what is the cause for all these issues. I am lost with where to turn next, so I am asking this to the public to see if anyone else is in a similar situation or knows what I have.

I absolutely appreciate any answers or stories.

Thank You!

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4 Replies:

  • Sorry without knowing what specialists you've already seen it's hard to comment..Have you already had allergy testing done ? in the past 12 months ? Have you ever kept a food diary ? to see if symptoms are worse or no different?Samanthahttp://www.undiagnosedillness.org
    Anonymous 42789 Replies Flag this Response
  • Hi,I suffered from many symptoms similar to yours for NINE YEARS....Went to 24 different docs and specialist...1st they said..o you need a hysterectomy, then it was fibromyalgia, then chronic fatigue, then IBS, then, well its all just surgical menopause; I could go on and on with the diagnosis that have no test to confirm, because all other test turned up normal. Spinal blocks, knee blocks, unnecessary surgeries, muscle cramps, spasms, ....daily pain, horrible pain, fatigue, feeling like I was sick all the time, then people thought I was just a hypochondriac....then you just want to die to end the suffering....Got the t shirt.Tingling, hands, feet, legs, arms going numb having to "shake it out" in the middle of the nite from going numb....all this. Had IBS diarrhea so badly for nearly a dam decade, doubling over cold sweating, cramping kind...could no longer work when this started.Within a few years of becoming so sick, weak and tired all the time (insomnia and depression too...with severe night sweats....of course that was after the hysterectomy for heavy painful periods...at the age of 34, then they said it was all in my head. Even calling it Somatiform pain disorder, bi polar disorder, PTSD...OMG...locked me up in the mental ward three times, nearly died three times from severe adverse effects of the head drugs they had me on...because all blood and mri test were "Normal"....they had me believing this crap too.I had severe allergic reactions to just about all meds they tried me on, every thing you can think of for depression...then they said I was bi polar....you name it, if there was no test to confirm it, I was diagnosed with it... Come to find out, the hair loss was caused by the anti depressants and bi polar drugs...which grew back over several months time after discontinuing....ALL OF IT, a laundry basket full of meds..that made me have to take tons of OTC meds to combat the side effects of those, like antiacids, anti nausea, anti diareahh, zantac, this list is way too long, you get the picture.Skin probs, rashes, staph infections MRSA....had all that too...but yet, yes, it was supposedly all in my head. Had a lung infection for 8 months....lost the use of my left leg, draggin it around, lost vision in my left eye...had to wear a patch, my tongue stopped working, could hardly form words anymore, could not think, concentrate, drive, was near death....AND THEN....I had to pay for a test myself for LYME DISEASE, after my sister suggested trying that.... YES it was LYME, all this time, plus an allergy to mold....well Lyme makes you hyper allergic to many things, especially meds, suffering severe adverse reactions to all the drugs and inhalers they had me on for the asthmatic symptoms.Best thing I can tell you to do is:1. Remember if you have ever pulled a tick off of you....2. Remember if before you became ill with listed symptoms here, within weeks- a month or so after u pulled the tick off if you suffered from flu like symptoms, it would feel like a VERY bad case of flu. Did the area become red or swollen where u took the tick off? 1/2 of the people get that. 3 Go to the website for IgeneX in CA...they test only for Lyme and are the ONLY lab that does the DNA test for Lyme...trust me, I had three negative test come up with using the standard test the doctor will send off...those are 70 percent unreliable, due to CDC BS. No matter what your doctor tells you the results are, get a copy of the Igenex test, it is still tricky even with the proof in your hand, because in order for Igenex to say yes, it is Lyme, they have to go by current CDC guidelines which say you have to test positive for 5 bands...also not true....you can be indeterminate for 2 bands and still have Lyme like me. Then take the results to a LYME LITERATE MD...any other kind of specialist will not do.My Lyme doctor told me this test is like a pregnancy test, you cant be just a little bit prego...(indeterminate test bands, vs. full positive) 4. Watch the video trailers on YouTube "Under Our Skin" there are like 5-6 parts on there 5 min long, for a little Lyme Education. Real people, real stories.5. You must get off all medications you are on, they are probably what is causing your hair and skin problems, and making the IBS worse, along with all your symptoms, like I said medications are NOT tolerated due to extreme adverse side effects if you have Lyme. Ask your doctor how to safely come off of them...some u must come off slowly or suffer worse side effects. (Read the package inserts for adverse effects, many cause lung symptoms, (EVEN ASTHMA MEDS cause lung infections...) rashes, hair loss...etc...and many that are "free samples" ....throw that crap out! You are being used as a guinea pig by the FDA...all adverse effects not known yet on those, as the FDA will tell you if you call the FDA adverse effect drug hotline...or they will just hang up on you as they did me, because they have no answers, and will say yes, it has been on the market for three years, but the full reports aren't in yet, we are still gathering data....this should be a crime against humanity! Free samples..yea, ok, nothing is EVER FREE)6. Immediately start dye free BENEDRYL, I was able to see again within hours, after being nearly blind for three months, and my tongue stopped going dead too, so I could speak again. Turns out all that was caused from asthma inhalers.....go figure...- Every night to help detox your body from chemicals, take an Epsom salt bath, stay in there till the water turns cool, start it as hot as you can take it....soak...this will help also with body pain, edema (swelling), and diarrhea. Use 2 cups for the tub.Best thing for my skin was using a cream you have to ask the pharmacist for behind the counter....it has the active ingredient, Urea...best for dry flaking skin, great on peeling feet. Carmol 20 is one name, I got a prescription for it and it was covered by ins....but dont think you need one to buy it. By the way, I no longer have skin problems either....after suffering with that for years too.7. Contact nearest Lyme support group they will help you find a Lyme Literate MD, and give you guidelines for diet, and ways to improve your condition even before antibiotics are started. 8. I went on a 40 day fast of sorts, eliminating ALL sugar from my diet....and I do mean ALL. The spirochetes (LYME bugs) feed off of sugar and this makes them grow and spread, in your GUT... Start diflucan..anti yeast med...dice up fresh raw garlic and sprinkle it on fish, fresh raw dark greens like spinach salads, eat that three times a day, this helps to kill it and restore bowel health....DO NOT eat anything pre packaged or fast food....nothing processed at all...the chemicals are horrible for people with LYME. After you get well, you can go back to your old bad habits if you must, this is not a forever diet, just 40 days. Use only olive, oregano, or coconut oil to cook your fish or chicken in, and dont bread it. Avoid all wheat, and bread too... Go fresh and raw as much as possible, and avoid red meat as well. Coconut oil is great for restoring bowel health. If you are addicted to tingly drinks like soda....dont drink diet...chemicals again.....buy apolonaris sparkling mineral water, and put some fresh lemon or lime in it...I like it with the juice of 1/2 lime and 1/4 tsp of salt.... Lastly....drink water, water, water...and more water....I drank about 2 liters a day. I also used DanActive Probiotic Immunity 4 oz. drinks daily to improve bowel health...has some sugar, not much though, takes care of the hairy tongue....if you have a coating on your tongue that you cant get rid of, its all connected to the IBS. Xifaxin cleared it for good, which is an antibiotic for intestinal bugs I think, this one aint cheap either, only took it for one month.Also I did acupuncture and massage therapy....definitely helps with pain and detox, don't think I could have recovered so quickly without it, 1-2 treatments a week for six weeks, then once a month. Tell your doctor you want to safely come off ALL meds other than antibiotics, folic acid, and di flucan...these are necessary. The first month will be rough, but mark my words, you will feel better than you have in years. They put me on Zithromax, Malarone, Xifaxin, Deplin, Cerefolin NAC, and Diflucan...had me well in a few months. Was not cheap...bout 1300 a month, but cheaper than 10 years of being sick I assure you, this was not a drop in the bucket compared to living with symptoms and seeking a cure that would never come until I became my own health proxy, and did years of my own research, I was not buying the crap about being ALL IN MY HEAD....even the psychiatrists are nothing but pill pushers these days!Well, good luck to you, I hope this helps, it almost seems that doctors want to keep you sick so you will keep coming back and buying all those expensive meds that only make things worse. That was my 10 year nightmare. I have not taken one prescription drug now in nearly a year after being treated for chronic Lyme...and not ONE bout of diarrhea either, except for a food bug bout, but whole family got sick too. I am functioning in society again, still not 100 percent, don't think I will ever get my complete health back, but at least I can cook, clean, drive, shop, and THINK clearly again, O and I have my HAIR back. Hoping to get back in the workforce soon, but of course I cannot find a job now after being out of commission sick for 10 years, no one wants to hire me, add to that 10 percent unemployment rate.....I am hosed, bankrupt from medical bills and lack of income...but at least I have my health.Sincerely,Lori MCahaba1 @ bellsouth.net
    Anonymous 42789 Replies Flag this Response
  • I agree with Lori. If you're taking any medications whether prescribed or over the counter I would discontinue use, if possible, immediately to see if you start to feel better. Your side effects sound like one of those adverse reactions to some of the medications out there or even over the counter. We are all different and our body chemistries may differ as well, so sometimes a side effect you may be experiencing may not even be listed as a side effect and sometimes I don't think they even put EVERYTHING on there since who would take it, but that's just my opinion. My advice would the process of elimination and try to keep a diet journal to see if it could be certain foods. Basically try to do everything right: a multi-vitamin, eat healthy, and drink only water for a while and hopefully your healing process will begin. Good luck and feel better.
    KQuinn 11 Replies Flag this Response
  • I can almost guarantee that you have some degree of gluten sensitivity. Celiac Disease testing almost always comes back negative and there are tens of thousands of undiagnosed people out there who would benefit from a gluten free diet. Observe the same diet that the above poster on Lyme Disease said, but also avoid Gluten Containing Foods. You'll have to research that on your own because it's too in depth to go into here. But there are lots of resources out there. Gluten is not your friend. Get off COMPLETELY WITHOUT CHEATING for 60 days and I'll bet that you have significant improvement.Kerri Knox, RNFunctional Medicine Practitioner
    Anonymous 42789 Replies Flag this Response
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