Discussions By Condition: I cannot get a diagnosis.

No diagnosis--any ideas?

Posted In: I cannot get a diagnosis. 6 Replies
  • Posted By: Anonymous
  • April 9, 2008
  • 05:53 PM

I am recovering from an extended illness (several weeks) that came on as an "attack" of some kind. I had neurological symptoms that started with ataxia and progressed to changes in vision, hearing and mental status. I had severe abdominal pain that was more right sided and radiated to my back. After a period of weeks I became bed ridden and had trouble walking. I went to the wrong doctor and was told that it was "all in my head" which forced me to struggle to get help elsewhere and fight the damage to my medical records and the stigma. Finally the attack of sorts waned and I have been left with neurological abnormalities that showed up in my upper body as well as central sleep apnea, balance problems, numbness and lots of pain. Previous I had been diagnosed with autoimmune thyroiditis but it was under control with medication. My blood sugar was a little higher but certainly not in the range of diabetes. I do not drink alcohol and I do not smoke but I had been on a variety of medications for some time. I have no idea what happened to me or why. This is the second time in my life that I have had such an attack with neurological problems although the first time it happened several years ago it wasn't of this magnitude. One of the things that showed up on a urinalysis was a mildly elevated porphyrin but once the symptoms decreased it was too late to repeat testing for a diagnosis. I do not know what to think or believe but I do live with some fear and frustration that should this happen to me again I won't survive it or will be severely disabled. It was awful to try to get medical help and not be believed for some time. I welcome any ideas or help.

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6 Replies:

  • Stroke, brain tumor, multiple sclerosis, prescription or recreational drugs, alcohol, B12 deficiency, etc. could all be causes of ataxia.Have you been tested for candida, celiac disease or gliadin intolerance? From what I read these are very possible per your symptoms.http://candidapage.com/cccomp.shtmlhttp://pubs.acs.org/subscribe/journals/mdd/v04/i04/html/MDD04DeptDiseases.html
    Beth56 272 Replies Flag this Response
  • Stroke, brain tumor, multiple sclerosis, prescription or recreational drugs, alcohol, B12 deficiency, etc. could all be causes of ataxia. Have you been tested for candida, celiac disease or gliadin intolerance? From what I read these are very possible per your symptoms. http://candidapage.com/cccomp.shtml http://pubs.acs.org/subscribe/journals/mdd/v04/i04/html/MDD04DeptDiseases.html im going to say brain tumor sike anyway. i think you may have had a stroke, go to a doctor soon please
    Eyes, Ears 24 Replies Flag this Response
  • Have you checked to see if you have whats called a herniated disc in your back. This could be the main cause of all your troubles. Hope this helps. Good luck.
    Anonymous 42789 Replies Flag this Response
  • You may want to be tested for other autoimmune disease ...it is not uncommon to develop another when you have one....thryoid autoimmune...Hashimotos? Graves? Thyroid antibodies ...were they tested recently? When my antibodies for thryoid were high...even though medication kept the FT4 and FT3 and TSH in range...I had many symptoms and felt awful....also ovarian hormonal changes...these do fluctuate as you know...and perhaps something going on there may account for these "attacks" that you experience...perhaps this and the combination of the antibodies.....Joan
    Joan5555 316 Replies Flag this Response
  • Hi Lily,There's a rare complication of autoimmune thyroiditis called Hashimoto's Encephalopathy. It can cause ataxia, fatigue, stroke-like episodes, confusion/mental status changes, etc.The symptoms vary from patient to patient. Mine are fatigue, ataxia, and headaches primarily, but each person looks different. My symptoms come and go.I'm not sure if this fits you or not, and I am certainly not trying to diagnose you- only a doctor can do that. You might want to Google it and see if it's worthwhile bringing up with your doctors. Most doctors have never heard of it yet, and the ones who have traditionally associate it with psychosis, seizures, and coma... but I know from my own experience that you can have HE without these symptoms too.In any event, stay away from doctors who think you're a psych case. For years, I let mine convince me that I was creating my own symptoms. NOT GOOD!
    Anonymous 42789 Replies Flag this Response
  • Hi Lily, There's a rare complication of autoimmune thyroiditis called Hashimoto's Encephalopathy. It can cause ataxia, fatigue, stroke-like episodes, confusion/mental status changes, etc.The symptoms vary from patient to patient. Mine are fatigue, ataxia, and headaches primarily, but each person looks different. My symptoms come and go. I'm not sure if this fits you or not, and I am certainly not trying to diagnose you- only a doctor can do that. You might want to Google it and see if it's worthwhile bringing up with your doctors. Most doctors have never heard of it yet, and the ones who have traditionally associate it with psychosis, seizures, and coma... but I know from my own experience that you can have HE without these symptoms too. In any event, stay away from doctors who think you're a psych case. For years, I let mine convince me that I was creating my own symptoms. NOT GOOD! i agree 100% with this. most doctors will make you think you are creating symptoms. but dont beleive it. just because they are doctors doesn't mean they know everything
    Eyes, Ears 24 Replies Flag this Response
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