Discussions By Condition: I cannot get a diagnosis.

Please help with this mystery. Thanks.

Posted In: I cannot get a diagnosis. 19 Replies
  • Posted By: Gertie
  • October 22, 2007
  • 09:26 PM

I am a twenty year old female psychology student and am currently been seen by immunology. (I have previously seen Rheuotology and Dermatology - from whence I received this referral).

Possibly unrelated, I am seen in Cardiology for an ongoing heart problem...soon to begin treatment.

These are the symptoms;


face rash (especially when light)
skin patches (looks and feels like friction burns) approx 2/3 a month in different regions of body
regular abscess (limbs)
extreme fatigue (can sleep for ages and wake feeling exhausted)
some joint pain
cold hands and feet
(fainting - cardiology) approx 2 weekly
mouth and genitalia ulcers
abdominal pain
persistant urinary infections
frequent colds/infections
nausea
nose bleeds
headachesI have maintained normal lifestyle with this, but am getting to the stage where I want a diagnosis and treatment...i am tired of it! :(

Please help.

Thanks!

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19 Replies:

  • Have they ruled out Lupus and other auto immune diseases yet such as Rh. arthritis and Stills Disease?I am a twenty year old female psychology student and am currently been seen by immunology. (I have previously seen Rheuotology and Dermatology - from whence I received this referral).Possibly unrelated, I am seen in Cardiology for an ongoing heart problem...soon to begin treatment. Thanks!
    Anonymous 42789 Replies
    • October 22, 2007
    • 09:37 PM
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  • How about syphillis?
    Monsterlove 2921 Replies
    • October 23, 2007
    • 00:43 AM
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  • Nope...definitely not. The symtoms began at age 12. And I have been tested for all that sort of stuff anyway...no.Thanks
    Anonymous 42789 Replies
    • October 23, 2007
    • 07:54 AM
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  • What's the cardiac problem? endo-,peri, or -myo-carditis?
    rad-skw 1605 Replies
    • October 23, 2007
    • 09:05 AM
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  • Myocarditis and chronic neurocardiogenic syncope
    Gertie 4 Replies
    • October 23, 2007
    • 02:58 PM
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  • Defintitely not an STD/STI Symtptoms began when I was 12...plus it has been tested since being sexually active...and no. Thanks
    Gertie 4 Replies
    • October 23, 2007
    • 03:00 PM
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  • hi gertie, some of your symptoms are consistent with lupus, as is your age of onset. hope this helps--feel better!
    Anonymous 42789 Replies
    • October 23, 2007
    • 09:41 PM
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  • Forgive me if I spell it wrong but it sounds alot like bechettes syndrome. A friend of mine was just diagnosed after 3 years of misdiagnoses and alot of pain.
    Anonymous 42789 Replies
    • October 24, 2007
    • 01:30 AM
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  • perhaps crohn's diseaseI am a twenty year old female psychology student and am currently been seen by immunology. (I have previously seen Rheuotology and Dermatology - from whence I received this referral).Possibly unrelated, I am seen in Cardiology for an ongoing heart problem...soon to begin treatment. These are the symptoms; face rash (especially when light) skin patches (looks and feels like friction burns) approx 2/3 a month in different regions of body regular abscess (limbs) extreme fatigue (can sleep for ages and wake feeling exhausted) some joint pain cold hands and feet (fainting - cardiology) approx 2 weekly mouth and genitalia ulcers abdominal pain persistant urinary infections frequent colds/infections nausea nose bleeds headachesI have maintained normal lifestyle with this, but am getting to the stage where I want a diagnosis and treatment...i am tired of it! :( Please help.Thanks!
    Anonymous 42789 Replies
    • October 24, 2007
    • 04:32 AM
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  • Causes of myocarditisYears ago, rheumatic fever was a common cause of myocarditis. But today there are usually other reasons for the condition. Most often it develops secondary to an underlying infection caused by:Viruses. The virus most often associated with myocarditis is coxsackievirus B. But adenovirus, parvovirus B19, echovirus, influenza virus, Epstein-Barr virus and rubella virus are also causes of myocarditis. HIV, the virus that causes AIDS, can directly infiltrate the heart muscle. Bacteria. These include Staphylococcus aureus, which can also cause an infection of the heart valves called endocarditis, and a tick-borne bacterium called Borrelia burgdorferi, which is responsible for Lyme disease. Myocarditis also occurs in more than one-fourth of all people with diphtheria, a disease caused by the bacterium Corynebacterium diphtheriae. Parasites. Among these are such parasites as Trypanosoma cruzi and toxoplasma, including some that are transmitted by insects and can cause a condition called Chagas' disease. This disease is much more prevalent in Central and South America than in the United States, but it can occur in travelers and in immigrants from that part of the world. Chagas' disease is the most common global cause of congestive heart failure. Fungi. Candida, aspergillus and histoplasma are rare causes of myocarditis.Myocarditis also sometimes occurs when a person is exposed to:Certain chemicals. These may include substances such as arsenic and hydrocarbons. Medications that may cause an allergic or toxic reaction. These include antibiotics such as penicillin and sulfonamide drugs, as well as some illegal substances, such as cocaine. Systemic diseases. These include lupus, other connective tissue disorders, inflammation of blood vessels (vasculitis), and rare inflammatory conditions such as Wegener's granulomatosis.Yow. Have they figured out why you have myocarditis?·http://www.mayoclinic.com/images/nav/logo_mayoclinic.gif http://www.mayoclinic.com/images/nav/elem_publictab_bluecorner.gif http://www.mayoclinic.com/images/nav/clear.gif
    rad-skw 1605 Replies
    • October 24, 2007
    • 07:00 AM
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  • No they haven't found out why I have myocarditis...although I had a huge bout of shingles at the same time of influenza (hospitalised)...maybe?They have ruled out R. arthritis and such like...Lupus is been thrown round a lot by docs but not diagnosed and not ruled out. Behcets syndrome is also been looked into.What should I ask my docs to do...or what can I do (just want to feel better)!Thank you all so much!!! Keep the ussgestions coming please...you guys are fab!
    Anonymous 42789 Replies
    • October 24, 2007
    • 06:52 PM
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  • Complications of Crohn’s Disease

    Recognize the risks associated with Crohn’s disease.

    8 Surprising Facts About Cholesterol

    Did you know that one in six US adults has high cholesterol?

  • They have ruled out R. Arthritis etc...Lupus and Behcets been looked into at the moment (I think this is my way forward maybe!).Never found out why myocarditis although I was hospitalised with flu and shingles when I was 10...very poorly at the time (although isolated incident)...but I didn't think this would cause heart probs...????What do I do...ask doctor to do now??? I just want to feel better!!!Thank you so much everyone...please carry on helping.
    Anonymous 42789 Replies
    • October 24, 2007
    • 06:56 PM
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  • Pituitary disease could account for all of your symptoms. Ask them to rule it out: LH/FSH/TSH/ACTH and AM Cortisol labs should be run. Also a Thryoid, liver, and kidney panel.
    Anonymous 42789 Replies
    • October 25, 2007
    • 02:24 PM
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  • There are many kinds of RH. diseases. Rh. Arthritis diseases may still need to be ruled out after all. They ruled it out at the moment those tests were last done but down the road you could have another flare up with lab findings that can later confirm a diagnosis. * Virus infections can trigger flare ups with auto immune diseases such as Rh. Arthritis and Lupus. I am glad to hear you are being seeing by someone specializing in immunology. BTW Systemic Lupis Erythematosus (Lupus) is in the category of "Arthritis & Musculoskeletal" disorders as is rh. arthritis. Are you seeing a rheumatologist . dr now? Since Lupus is not ruled out yet I would look for a dr if you don't have one alread who is very experienced in treating auto immune disorders like Lupus and other inflammatory arthritic diseases given your symptoms of joint pain, rashes sensitive to light, myocarditis , skin abscesses, fatigue, cold hands/feet; freq. infections and abdominal pain. You can still have RA even if your tests don't show positive for the Rh. factor also.Some folks with RA never have a positive RH factor. Could the skin patches you have be psorisis? If so another kind of arthritis can go hand in hand with psorisis. What has your dr said about the patches? What did the dermatologist dr think about the patches? Good luck on your search for answers. Work closely with the rheumatologists and your dr. It can take sometimes take an unbearable amount of time for some folks to get diagnosed for such disorders. Hang in there. I truly wish you didn't have to go through so much pain and illness at such a young age. Lupus is a serious diseases if that is what you have but there have been strides in medicine made that are allowing many Lupus sufferers to live longer and better lives than years ago. I hope you get your answers and get some relief soon. They have ruled out R. Arthritis etc... Lupus and Behcets been looked into at the moment (I think this is my way forward maybe!). Never found out why myocarditis although I was hospitalised with flu and shingles when I was 10...very poorly at the time (although isolated incident)...but I didn't think this would cause heart probs...???? What do I do...ask doctor to do now??? I just want to feel better!!! Thank you so much everyone...please carry on helping.
    TaylorDeelwithit 382 Replies
    • October 25, 2007
    • 09:42 PM
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  • I live in the UK, and therefore as soon as a doctor has ruled out the 'referring drs suggestion' you tend to be discharged; therefore no rheuotologist anymore, and I see the dermatologist once every twelve months (he is completely baffled!!!!)I am seeing my immunologist this wednesday (and in a horrible way) hope I have a skin patch for him to see...maybe he could shed some light.Thank you so much for the suggestions, and the tender care too.I will keep you updated (I feel a little more armed to go into my appointment)Thank you.
    Gertie 4 Replies
    • October 29, 2007
    • 10:37 AM
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  • You are suffering Immune Dysfunction. I had over 70 symptoms and had all of yours except the facial rash which is "inflammatory response" in your body. Please look for NAET or Bioset therapy locally to you and go. It is the only thing that is going to help you. The "real" docs will just pass you around and around as you continue to pay them for doing nothing for you. Been there, done that. Please take this advice. In this forum is where I got the same advice in June. 3 months later, I was back to work when last year I was told to apply for social secuirty. I was deteriorating. Now I am healthy and happy. I wish the same for you. take care, mommy cat.
    mommy cat 1654 Replies
    • October 29, 2007
    • 11:06 PM
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  • I saw my immunologist this week, they had results; abnormal but within normal blood results (I do not have a copy...England!) I have been sent to a gastro Dr as he thinks I have internal ulceration in my stomack and duodenum but not sure...waiting for appointment!I am on colchicine (500 x2/24) ... Thats all til my next appointment..so much for diagnsosis and treatment I was promised?!Thanks to everyone here though!!!!!!!!!!!!PS Mamma Cat...thank you so much...I live in UK and don't pay for NHS so not sure I could fund any other treatment...student and stuff (how much in US) Thanks angel.
    Gertie 4 Replies
    • November 3, 2007
    • 08:52 PM
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  • Have you been worked up for Behcet's syndrome? It can cause genital and oral lesions as well as myocarditis, plus other stuff.
    Anonymous 42789 Replies
    • November 4, 2007
    • 04:37 AM
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  • Causes of myocarditis ...Yow. Have they figured out why you have myocarditis?You can also get myocarditis from severe under treated hypothyroidism. I know because I have it along with pericarditis and several complications.
    Anonymous 42789 Replies
    • November 5, 2007
    • 10:27 AM
    • 0
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