Discussions By Condition: I cannot get a diagnosis.

Two decades of random symptoms

Posted In: I cannot get a diagnosis. 4 Replies
  • Posted By: LudwigVan
  • November 14, 2008
  • 08:08 PM

Sorry if I'm hard to understand at times; I'm having some of that "brain fog" today and I get mentally tired really easily. For the record, I'm 37, male, Caucasian/part Native American and living in Austin, Texas.

It all started around the time I graduated from high school. I started having unusual tiredness, mood swings and general malaise. (It was only months after I had chicken pox and less than a year after food poisoning, if that means anything.) It got bad enough that I had to drop out of college, and I quit several jobs and was unemployed for months at a time. I did okay otherwise until my late twenties, and I thought all these weird symptoms were psychosomatic. I was diagnosed with depression, then bipolar disorder after that, and took some two dozen medications at different times. But they didn't solve the medical problem, and they got worse over the years.

They've especially been a problem in my thirties, and it's no longer only fatigue and bad mood. I'll try to keep it as brief as I can, but there's a lot to list here. Most of these have come and gone for a long time, but they're getting more permanent all the time.

memory, concentration and general thinking problems
moodiness, irritability, giddiness, anxiety and rare hallucinations and paranoia
a sense of changes in personality and dissociation
blurred and "washed-out" vision that comes and goes
ringing in the ears and difficulty understanding speech
infrequent headaches
insomnia and night terrors
dizziness, vertigo and near-fainting
sharp, stabbing facial and jaw pain
dental problems and bleeding gums
difficulty swallowing, throat pain
slurred, nasal, hoarse or shaky speech
sometimes paralyzing physical and mental fatigue especially after even light exercise or exposure to heat and humidity
aches and pains in random locations and of any type of varying severity
tingling, numbness, other sensations including crawling and burning; anywhere, not only extremities
stiffness in muscles or joints
shaky hands (not the kind you get with Parkinson's disease)
tremors and twitches anywhere, sometimes major and seizure-like
feeling "too hot" or "too cold" for no apparent reason
nausea, vomiting and indigestion
constipation, diarrhea and gas
erectile and other sexual dysfunctions
difficulty walking due to stiffness or shakiness in legs and feet
skin problems, but not the rashes associated with Lyme disease or lupus

So far, I've had doctors diagnose ataxia, type 2 diabetes (blame all those psych meds for the weight gain) and possible MS. I did see a neurologist earlier this year, and he didn't think it was MS, diabetic neuropathy, Parkinson's disease - he blamed it on bipolar disorder somehow. I get the feeling that he thought I was delusional or malingering. I got a similar treatment in the ER last year during a bad flare-up - instead of at least doing a CT scan to check for a stroke or tumor, they gave me a shot for nausea and sent me home. I did get an MRI, but that neuro didn't bother to even check it as far as I know. Also, blood tests were normal other than the mild elevated blood sugar - thyroid levels were normal and I don't have HIV or syphilis or anything like that.

I think I should get a second opinion, especially after I know some people personally who had to see a dozen or more doctors and wait a couple years to get diagnosed and treated. I'm on Social Security disability, and I can't exactly afford all the copayments involved with seeing doctors and hospitals.

But if it's not MS or any of the other things, what else could it be? I guess CFS/ME or fibromyalgia are possibilities. I also would like to know how I can get more competent treatment instead of one of those doctors who sees you for three minutes and thinks he's got you all figured out and doesn't take your complaints seriously.

It's costing me time and money, and I'd like to get diagnosed and treated before too long. I can no longer work or even drive, and I'm stuck indoors so much of the time it's driving me nuts.

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4 Replies:

  • Maybe celiac disease. Try here: http://digestive.niddk.nih.gov/ddiseases/pubs/celiac/index.htm
    aquila 1263 Replies
    • November 14, 2008
    • 08:13 PM
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  • Maybe celiac disease. Try here: http://digestive.niddk.nih.gov/ddiseases/pubs/celiac/index.htmI considered that a while back, and I even gave up gluten for a couple of weeks, but I didn't get any better.I also thought of B12 deficiency, so I started using sublingual drops. Then I forgot all about it.
    LudwigVan 1 Replies
    • November 14, 2008
    • 08:19 PM
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  • Could part of this be Friedrichs ataxia? Good luck with everything!
    Felsen 510 Replies
    • November 14, 2008
    • 09:53 PM
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  • Severe B12 deficiency does explain all of your symptoms and sunlingual drops wouldn't have helped. Get a B12 injection and see if it helps. I'll keep thinking about your symptoms cause they are very interesting. I don't think you are crazy I think there is something wrong with you that was initially simple but missed by you doctors.Additional thoughts : The fact that your symptoms started just after you graduated from high school is an interesting clue. Did you perhaps move out of home or change you diet at that time ? How many time a day do you eat fruit and vegetables ? B12 and folate deficiency can cause some very serious problems as they are a crucial for your cells to divide and for you nerves to get a covering sheath called myelin.
    gungwane 62 Replies
    • November 15, 2008
    • 08:45 AM
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