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Old 12-26-2006, 11:20 PM #5
Mariel Mariel is offline
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Join Date: Dec 2006
Posts: 724
15 yr Member
Mariel Mariel is offline
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Join Date: Dec 2006
Posts: 724
15 yr Member
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I got my MS dx first, then a decade or so later they added the dx Porphyria. Porphyria usually includes neuropathy among its symptoms. I had a bad spell of neuropathy a few months ago while still in Seattle, and had to be in a hospital overnight on a glucose drip, which is the most common "treatment" for porphyria attacks. I am still having the neuropathy in my feet, but it is better, which is sure handy, as I have lots of work to do in my New Mexico home, to which we returned a month ago (we own it, and could not afford even a condo in Seattle unless we sell this house).

Porphyria, Craig, is a genetic illness in most cases (there are a few acquired cases). It can cause myelin sheath destruction, usually in a pattern a little different than the most preferred MS locations. I do have some lesions in the Periventricular areas, but more in other areas I forget right now (Temporal, etc.) Not all people with Porph get the lesions; it is usually in a case like mine where dx is delayed and a lot of damage is allowed to occur.

You might look into Porphyria, as VERY few doctors include it in the differential diagnosis. Most often they say "it's too rare to be considered." We who have it and correspond on the internet know that it is NOT as rare as they think. One doctor we all like says that it's at least 20 times as common as is dx'd. I note on the Braintalk forum (the old forum) that those looking for alternative dx's rarely try porphyria--it's everything else under the sun. Perhaps that is because one of the common syptoms is abdominal pain, probably caused by neuropathy affecting vascular nerves. I myself have passed beyond the ab pain level, probably due to destruction of nerves there and passing the menopause (estrogen encourages porph). I had some neuropathy in my arms most of my life, undiagnosed, but the foot neuropathy has come on later, and is diagnosed as probably part of my porphyria.

It is VERY important, if there's any chance you have it, to look into what drugs are safe/unsafe and what foods encourage attacks and what chemicals in the environment encourage it....

I probably told you this several times before, but it's just something which should be in the differential diagnosis, and I don't remember you mentioning it, Craig.

Mariel
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