I am kind of new here. I have been reading post on and off for the last few years. I just don't post myself, but thought I would today.

My son was kind of diagnosed with MPGN unknown type at the age of 12. He is now 16. They have never been able to give us a strong diagnoses as he doesn't quite fit anything. They tell us he is writing his own book. He has had 2 biopsies, both were inconclusive. We have had many different Dr. look at him, they are all confused by him. We have a wonderful Neph that I love. He is so good, so that is a comfort for us.

He is currently on Prograf, Prednisone, Lasix, Magnesium, Cozzar and Atenolol. We have tried other meds but nothing has worked. The prograf was an experiment that has worked well. His protien in a 24 hour was as high at 18,000 but usually stayed around 12,000. For the past year it is at a strong 1200-1400. Still not good but we will take it.

He is tired alot and can't attended school full time and is usually homebound (teachers come to our house). His blood pressures are out of control most of the time. I stress everyday. I can see by ready post most of you understand all this.

Well I just thought I would share. I have been dealing with this for a while and would love to help someone that is just starting this nightmare and would love some feed back for myself.

Hi my son has had mpgn 1 for the past 5 yrs..your son seems to have alot of symtoms as my son,,,alway's tired ..high blood pressure...he is 18 And I'm wandering how he is gonna make it through life....We have a good Dr. here that we think is great,,, Is your son sick alot..no energy

Cody gets sick easily and when he does it is scary sometimes. He was hopitalized for the flu. If I let him do normal 16 year old boy stuff he has no energy for life. I also wonder everyday how he will make it through as an adult. I keep telling my husband we will need to build an apartment above our garage for him to live. He can't even go to school full time let alone work.

I am so glad to finally find someone that knows, not many people have MPGN.

Are your son's kidney's ok right now? What is his normal protien in the urnine?

I am a 26yr old female who was diagnosed with mpgn 1 at 16. I too went through many of the symptoms your sons are experiencing and would be glad to share any experiences or advice. There are a few differences in our cases, since I was only ever on prednisone. I had problems with my BP but was never on meds for it, the doctors have credited my high activity levels for never needing the meds. I did go through the exhaustion and was sick atleast once a month with many different types of infections. I missed school all the time and was fortunate enough to have a high school that was understanding and let me graduate anyway. I just wanted to give you some hope for the future. I went off to college in a different state and even participated (rather successfully) in college athletics. I did have a lot of days were I was tired and sick and had to miss class or practice but through it all the prednisone worked and I came out of college a healthy adult living on my own. I know that your sons symptoms seem to be slightly more severe than mine but 10 years later and I'm doing great, feeling better than ever and I still have minimal levels of protein in my urine. I'm not sure what the future has in store for me since it seems that most people with mpgn are younger than I, but I'm optimistic and hope that you can be too. Good luck to the both of you...

Thank you so much for your post. I am so glad to hear that you are doing so well. That gives me hope.

We just went to the Dr on Sept 5 and they tell me Cody is in remission. I don't really understand this as nothing changes for him. He will still be on all the same meds and we still go every 3 months. From what I understand he doesn't have blood in the urine right now and that is what they call remissoin.

He is going to school half days this year and that is working so far. I try to stay optimistic but that can be hard to do most days.