Re: prophyria

[Guest guest]

I was also checked for porphyria several times via 24-hour urine collection

because of recurrent attacks of abdominal pain.

http://digestive.niddk.nih.gov/ddiseases/pubs/porphyria/

http://www.porphyriafoundation.com/

Barbara

> It is considered a metabolic/endocrine disorder. It has some symptoms

> that are the same as mito, so I know I was checked for it during the

> time I was looking for a diagnosis.

>

> laurie

>

>

> > Is prophyria a metabolic disease?

[Guest guest]

Porphyria was mentioned by some of my neuros, but I don't recall

getting a specific test for it. I do very well in sunlight, most

forms of porphyria involve skin sensitivity and sensitivity to

sunlight, so I doubt I have it.

Take care,

RH

> > > Is prophyria a metabolic disease?

>

[Guest guest]

I've probably asked before, but is red urine common in mito? It is

in porphria, but I haven't been tested for it. I've asked my pcp,

but haven't heard back.

Kim

> > > Is prophyria a metabolic disease?

>

[Guest guest]

In some forms of mitochondrial disease, red urine is common. In other forms

it is uncommon or, frankly, never occurs. In the OXPHOS disorders

(respiratory chain deficiencies) muscle breakdown known as rhabdomyolysis

can occur, but it is less common than in disorders of fat metabolism such as

CPT deficiency where it is the hallmark.

When muscle breaks down, myoglobin is one of the substances that leaks out

of muscle and is filtered out of the blood by kidneys into urine.

Myoglobinuria " looks " like blood in the urine but really isn't. The standard

dipstick test cannot distinguish between hemoglobin and myoglobin, but

further tests can determine if the color is from myoglobin.

Other kinds of disorders can cause red urine, for example, kidney problems.

Barbara

> I've probably asked before, but is red urine common in mito? It is

> in porphria, but I haven't been tested for it. I've asked my pcp,

> but haven't heard back.

> Kim