Discussions By Condition: I cannot get a diagnosis.

Been ill for 3 years, need advice about next step

Posted In: I cannot get a diagnosis. 6 Replies
  • Posted By: Anonymous
  • February 24, 2009
  • 04:14 PM

Female, 27 years old, have lost 3 stone in the past 3 years.

Chronic nausea, vomiting, dizziness and migraines after eating. Bad motion sickness, to the point it lasts for hours after travelling just a short distance, tacchycardia from an unknown cause, heart palpitations, brown urine with solid white flakes in it, intolerance to heat, occasional severe stomach cramps and bloating. Been sacked from my last job for calling in sick too often.

I have had an endoscopy, colonoscopy, CT-Scan, Barium meal and blood tests (white cell count, autoimmune antibodies, celiac disease, liver function, kidney function) all came back NORMAL.

I don't feel normal at all, I feel like I don't want to live anymore.

Am awaiting the results of bladder function tests.

Anyone have any idea what I can do from here or what it can be?

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6 Replies:

  • Have you ever had allergy testing ?Does anything make it worse or trigger off more symptoms? Keep pushing with your Doctor xxSamantha http://www.undiagnosedillness.org
    Anonymous 42789 Replies
    • February 26, 2009
    • 00:24 AM
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  • Hi- Sorry to hear you can't find a solution yet. I would get to the nearest MAJOR specialty medical center, such as Mayo Clinic, Barnes-Jewish,UAB, Johns Hopkins,UCLA or whatever is nearest to you and you will probably have to travel. Go to a specialist. Maybe a nephrologist, or an internist there is a good start then ask for a genetic workup.In the meantime ask family members about all family members who may have had wierd experiences or health issues or what causes of death come up so you may establish a pattern of symptoms in case it is hereditary. Hope that helps!
    gumspit 1 Replies
    • February 26, 2009
    • 07:17 PM
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  • Do a gluten free diet now!(forget the test)take out gluten totally, stop sugar, caseine maby too. Take probiotics. Then, you could have chronic lyme disease too. Read about it. Look on www.canlyme.com and see how many symptoms you do have it. Look on lymenet to seek a lyme specialist if you think to have it.They pass the good test and treat properly. Byebye
    Fannou 111 Replies
    • February 28, 2009
    • 05:37 AM
    • 0
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  • Look up dysautonomia.
    richard wayne2b 1232 Replies
    • February 28, 2009
    • 02:14 PM
    • 0
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  • Before you do that,give me an honest evaluation of the stress in your life.
    richard wayne2b 1232 Replies
    • February 28, 2009
    • 02:16 PM
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  • http://www.ncbi.nlm.nih.gov/pubmed/19056098 Cobalamin deficiency: Neurological aspects in 27 cases INTRODUCTION: Combined medullar sclerosis, together with peripheral sensory neuropathies, is the most common neurological manifestation observed in cobalamin deficiency. Biermer's disease is the predominant cause. Other clinical and etiological aspects are nevertheless frequent, although underestimated. METHODS: This retrospective study included patients with neurological symptoms and cobalamin (B12 vitamin) deficiency confirmed by laboratory tests collected over a period of 11 years. RESULTS: Twenty-seven cases were analyzed. Mean age was 47 years and there were 11 women and 16 men. Distribution of the neurological syndromes was: combined medullar sclerosis in 18 patients (67%), sensory neuropathies in 30% of cases and sensory-motor neuropathies in 15%. One patient had fronto-subcortical dementia with good improvement after vitamin replacement. In addition, autonomic dysfunction was noted in six patients (orthostatic symptomatic hypotension and/or urinary dysfunction and/or erectile failure). Dysautonomia revealed cobalamin deficiency in three patients with a good and fast response to the cobalamin therapy in all cases. Biermer's disease was diagnosed in 17 patients (63%) and a likely syndrome of nondissociation of cobalamin in two patients. One patient had Crohn's disease and no etiology was found in seven patients. In five patients (19%), nitrous oxide undoubtedly induced decompensation of latent cobalamin deficiency; four after a general anesthesia and one by chronic professional exposure. Outcome was very good in 46% of patients after vitamin replacement, particularly if treatment was started rapidly. DISCUSSION: The findings in this series highlight the frequency of autonomic dysfunction sometimes revealing cobalamin deficiency with a fast and good response to vitamin replacement and the frequency of neurological disorders following decompensation triggered by general anesthesia using nitrous oxide in patients with latent cobalamin deficiency. Most of those symptoms, except urinary, are part of the b12 plus cofactor universe of symptoms. Dysautonomia can be caused by cobalamin deficiency. Unfortunately the above abstract points to an article in French. However, there are many articles in English linking dysautonomia to b12 deficiencies. That possibblity can best be elliminated by a trial of active b12s and cofactors. As the article says, "a fast and good response to vitamin replacement" follows if that is the cause. I can post a variety of references as to why the test numbers can't tell you if this is the case but that only a trial can do that. Using active b12s instead of cyanob12 or hydroxyb12 increases your odds of sucess by a large percentage.
    Freddd 3576 Replies
    • February 28, 2009
    • 08:11 PM
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