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Neurology (Expert Forum)
Porphyria Symptoms Abound
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Porphyria Symptoms Abound
by An__0__0, Sep 20, 1998 12:00AM
I have Hereditary Coproporphyria which is one of the rare forms of Porphyria and my kids and brother and Mother have it. It seems that I have it the worst of all of them since I have more symptoms. I have mostly the neurological and psychological symptoms. For example I get like Tourettes tics that wax and wane but gets worse with stress. I get asthma like symptoms, hypoglycemic type & even seizure or panic attack like symptoms if I dont eat carbohydrates on time (like every 4 hours) I get asthma like symptoms and panic attacks from excercise. So I am fat at 5'8" and weigh 213lbs! I get bipolar type mood swings and my sleep patterns rotate around the clock and so running our family business with my husband is a challenge not to mention a zero social life since I never know when I will sleep next. I was tested 4 times at the big "M" clinic and all the specialists there say medications to treat the symptoms are a higher risk for me than the symptoms. Meanwhile it is sort of a vicious cycle and I wondered if anything would work to curb some of these symptoms.Keep in mind they have put me through almost every type of test possible EKG ECG MRI blood genetic and xrays and psych testing. Any suggestions??As I would like to lose weight and get my sleep cycles under better control and try to reduce panic, tics and asthma symptoms and depression symptoms.Thank you!
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If you are confident that medications are not an option, then it sounds like non-pharmacologic treatment is appropriate (though don't neglect medications and dietary therapy where it's needed, and don't abandon regular followup with your internist).
Have you tried various behavioral therapies - behavior modification? psychotherapy? biofeedback? One or all of these approaches may serve you well. In particular, I am thinking those may work best for sleep patterns and overeating, also panic and depression.
Tics are difficult to treat in any case - either with or without medications. Asthma? I can't give you guidance.
I hope this helps. CCF MD mdf.
