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Old 06-27-2012, 02:06 PM #11
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dej,
when you said interns my mind said ewwwwwww.
i'd stay with your own dr. it sounds like they're thorough. at least for now.
or, you could make an appt (for upteen wks from now) and see how you feel when it gets close.

saying a prayer for you and your eyes.
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Old 06-28-2012, 07:06 AM #12
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The local eye woman while amazing knows not much about nuero conditions of the eye and seems quite lost when she examines me. I am going to have to go to the special woman...if they will ever call me!
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Old 06-29-2012, 04:33 PM #13
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I do have dairy, Dejibo, just not high-fat dairy. I too need milk. And I am not off grains--I do not have celiac.
Your doctor is absolutely right that it is hard to get a Porph dx when you are not in a flare.
The only thing that is consistent (with or without flare) is the blood enzyme test. For years it was practically impossible to get that test (although I had it during the last years when Dr. Ellefson was running the Mayo Porphyrin labs, so I had the initial benefit of it). Now it seems once again to be a possibility--since Mayo gave it to me without me asking about it, apparently just to cover the waterfront of tests. And it was positive, although not high positive...I was not in a flare.
The only reason I have brought this up with you, as you know, is that you seem to fit a porph profile. I have talked to hundreds of porph patients on line over the last sixteen years, and you fit the profile to me...but that does not mean you have it. I can't dx it. I just suggest that testing is needed. It made a difference to me when it was suggested to me on the Harvard Neurology MS forum. I found out how to avoid triggers and that helped me a lot. Now that I am really old, I guess the MS is asserting itself more than it was for many years, as well as other things like Porph (in flares) and Polycythemia Vera.
I think I've spoken enough about the possibility of Porphyria in you so I won't continue suggesting the tests. But I might suggest it to someone else if I see another person who could have Porph. You are suffering grievously, in my view, and need help. I wish I could help. I can no longer help myself very much as i was able to do years ago.
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Old 06-30-2012, 08:12 AM #14
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D- good luck and great result whereever you decide to go! Boston has a huge MS chapter and I think they offer rides to appointments (at least within greater city limits). May want to reach out to them or to NH chapter; either one may have such a good reputation they perhaps could pull a few helpful strings?
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