I’m Peggy. I live in Utah. I haven’t been diagnosed but I’m sure I have a PKU problem. I don’t think it was always severe except now I see a correlation in my illness and symptoms that I had not recognized (and neither did my doctors). I have been diagnosed with Fibromyalgia but what does that mean? No one knows. My symptoms and problems are really mean headaches, anxiety attacks for no reason, severe mood swings, fatigue for no apparent reason, itchy skin, eczema on my face and sometimes my arms, ridges in my nails (could be something else but maybe my nutrition problem), spasms in my intestines (and chronic constipation all my life), deep muscle and tendon pain and spasms. I’m sure I forgot something but I have noticed also that inspite of coloring my hair which I’ve done for a long time now, I have white splotches mixed into my red/grey hair. They are just single white hairs, they are actually like “freckles” of hair together. Also, my skin tone is weird. My dad always had that milk white skin. Mine is like red-heads get only it’s mottled now with pigmentation that happens when there is a kidney problem (like too much adrenelin in the system). My doctors always look at it when they first come in the room but none of them tell me what it is. I think that’s very weird. I think doctors like having sick people to make them rich but maybe I’m being paranoid. And I’m sure that I should be. Anyway. I’m glad to have some place to talk about these things. I’ve felt alone for a very long time. No one understands what I have been through trying one diet and then another, trying to figure out how to feel decent. I’m tired of being sick and on extreme fruitarian diets. I’m very happy that I can have a few more items to choose from like vegetables and tapioca. I noticed I have to make it without the eggs and milk but I like rice milk. I can do with out eggs. Cheese is hard to give up because I grew up on mexican food as a teenager. I was adopted so I think some information was not given to my new parents about my needs. My parents were borderline “retarded/mentally ill” (I wonder about that…PKU?). Long stories I’m sure. I can’t find my mother now to ask her. Anyway, thanks for having me here. Peggy
Dear Peggy, nThank you so musch for posting your story. I found it fascinating. Im afraid I cant really advise you on how to deal with the medical profession who would be your first port of call . nHave you actually suggested PKu to them as a possible daignosis. Im sure a simple blood test will confirm your suspicions.
I help look after a man with PKU who was untreated (for about 7years that we know of) who had previuosly resided in a large hospital for people with learning/intellectual disablity.We know nothing of his medical past except that he has PKu .No info as to past diets or past interventions.
Neither do we have info about his family except that he was cared for by his mum until her death. nBefore dstarting on his new diet he always appeared to be moody but because of his low intellect and communication problems we were never able to identify what was wrong. He also looked like he was in some typoe of pain but again we were unable to identify this for sure.I prsonally suspected headaches but that was only a guess. Since going on the diet he is a new man.He appears to have more energy.looks like he is enjoying life and his much more communicative boyj verbally and non verbally.
I would guess that if your dad had pale skin and as you indicated had some learning problems then maybe you should point this out to your Dr and try to get hold of a dietician and and a specialist in PKu,even if you initially have to go through childrens services to do this.
I wish you all th luck and love in the world and hope you eventually reach a successful conclusion, nAnne