Pku Board

I've googled and googled but I can't find any info about untreated PKU for adults. I have much problems with my health, I can't barrely stand it any more. My thougts is, can you have PKU that makes ju feel sick when you gets older? As child I began to have tremors in my hands, very light but still. Today my tremor is so incresed that I have trouble with it very often, now the tremor is in my legs too, and head/neck. Other symptoms that I have is extreme fatigue, pains (a lot of them), dizziness, trouble with concentration (very much), sleeping problems, depression, sinusus problems, bad memory, swollen lymph nodes, mood swings, muscle twitching, cold feets.. Yeah the list is long, I should go to a doctor and look this up. They havn't found any other cause, yet... so yeah. And my son have PKU, is there a chance that I can have it too? Well he has the worst variant of PKU, is there at least any little chance that I can have PKU when I have a son that have it? And can I have a variant that he doesn't have then? Thanks for any answers. And my age is 24 btw.

Thanks for all your answers, really appreciate it! I think I got what you guys wrote, my concentration is really really bad. As fast as I read to much text I feel like dizzy or something. Well.. I will sure get tested, I don't know when but as soon as I can. Going to see my neurologist pretty soon again so I can ask they if they can run a test or I can just call the PKU lab and ask if they can send me that paper ju get blood on and send it away. I was in contact with them for a year ago, I did the test home and sent it away but they never called.. So well, I will call them when I can. Now it's christmas time and everything.

I think I am going to try to stay away from high protein food a while, my pains goes in periods and I've already 1-2 years ago realized that after eating food I had fatigue and felt very strange, ill.. I'm in a little period now with pains again, finally got out from one recently.. It's like today, I haven't eat a thing and I don't have this extreme pains that feels like be cutting up from the inside. I don't know if it's a coincidence.. But I think it's worth a try and hold to low protein food. I really like the most food so, unfortantly I know there isn't much food in the store without proteins.. But I like sallads and so on, or I love it! Well I think I'll try for a time or so

I saw a video on youtube a while ago, a girl that explained a little about her PKU and so on.. She explained that if she eat a hamburger today the symptoms for eating it could come a week after and.. didnt have to come directly. But I guess everyone is different in this case to like in everything else. Well, thanks for your responses really!! Feel free to write or ask anything you want.

Edit: To KateGilmore:

I am under investigation for my tremors, have only seen my neurologist doctor once and I talked about my other symptoms but somehow all the doctors don't listen or take you for serious. Mostly doctors here says all is in your head, well if they could feel what I feel they would know I suffer!! And I am from Sweden

Merry Christmas!

Hello, instead of making a new thread I was thinking of posting here.. I want to update, I still have no clue whats wrong with me, I have not had the strenght to fight for an answer. But now Im very tired of feeling like this, can't do it anymore. I have contacted a PKU society here, we'll see if they want to help me to look up this. But I think so. However, I get these strange seizures if you can call it that, after Ive been eating food lately.. It dont come directly, it takes a while. Can take 1 hour or more, I start to feel very strange, everything around just feels unreal, my body goes up on high turn.. And I got a high heart rate on that, feeling dizzy, or dizzy isnt maybe the right word.. Its so hard to explain. But It feels like my brain is going to shut off, 2 days ago I had something really bad.. I was sure I was going to collapse, felt like my head was all empty and my vision started to dissapear.. was really afraid. Dont want to have this again.. now Im bad after eating breakfast, felt pretty good first but now its just awful.. cant concentrate at all, its hard writing this.. But however, does anyone know if this could be familiar with untreated PKU? or can you have pains..? Thanks for any answers while Im searching for my help!

Thanks for you answer! I will look it up, but all I really need to know if its even possible to have PKU and be a carrier aswell? I dont want to look something up that it isnt possible to have.

I didn't know a person with PKU could be carrier aswell, but now I know. Thanks for telling that, even more worth looking up this for me. Doctors havn't found a problem with me before, blood tests etc all good. But something is very wrong, is this a coincidence that my son have PKU and food is getting me bad? Don't know.. can just speculate, have to do the test and we'll see.

But the blood test must be done on a paper with circles I guess? Don't know if the medical care have them, but I've emailed a PKU society and asked for help and we'll see what they can help me with.

I got a question for you with PKU, I don't know if you can drink alcohol. But if you can or have done it anyway.. does you get worsen hangovers?

And I will try to be on low protein food now in the meanwhile, not too low maybe but not high either.. Since I've noticed food is making me real real bad lately I don't want to eat much.. So have any ideas what I can buy from store to eat? Im not gonna have these attacks again, I eat fish yesterday morning.. Was so bad at the day I can't even describe.