Being your own doctor as usual!!!!

You can't just go to a doctor today and buy their claims straight up, NO! Unfortunately, you MUST be smart today to survive healthcare. I have been sitting since Marfan spoke and educated myself, on ALL the pages I can find, I have taken material from patients themselves who talk about the disease, I look at research sites both private and state-owned, I read everywhere, I dive deep and look for not just one why but ten whys...this is because I want to be able to help my daughter cope with her life in the best way, give her the best conditions.

One of Freja's big concerns is that she can't hold her urine, she simply doesn't feel like she's urinating, this has escalated since the turn of the year. You have to argue about this and wait and wait and nothing happens.

I was then told by the doctor that this has nothing to do with Marfan and then I really burned out....now I will explain....

Having marfan means that other complications/diagnoses and problems come along, all patients and relatives of patients tell the same thing about urine and bowel problems are very common and have had this concern. These are people from the US I talk to...everyone says the same thing, WHY DON'T THEY DO ANY MRI EL CT??? Because then they detect if there are the following errors....

Tethered cord- chained spinal cord that can occur in connective tissue disorders

Normally, the spinal cord hangs loose and free, but in people with spina bifida, the nerve tissue grows stuck in the hernia on the back=chained spinal cord!- The spine stretches out!

The person finds it more difficult to walk, the bladder does not work as it should and the sensation in the area disappears.

Duraectasia- enlargement of the connective tissue membranes that surround the spinal cord and cerebrospinal fluid.

Can occur along the entire spine.

Clearest sign of Marfan syndrome which occurs in 63-92% of people who have the syndrome!!!!!!

Can cause problems such as backaches, headaches and neurological symptoms such as bowel and bladder problems.

Both Tetheredcord and Duraectasis can be found by doing MRI El CT, and this is done in the US directly but not here....

Now understand why I'm pissed, this is a big problem for Freja who says she doesn't feel when urine comes, it just flows out of her.....HOW CAN YOU SAY THAT MARFAN HAS NOTHING TO DO WITH THIS PROBLEM? ??? And the doctor also wanted to send me to the health center.....damn, I was pissed off and dialed 1177 so tomorrow we have an appointment with him and I will take this information with me and demand x-rays even if unfortunately they require that she must put to sleep, but she is almost 5 years old and we have to have a plan on how to help her. To wear a diaper or not...well that's the question, what's right, what's wrong? But soon we will have -30 here in the north and it will be a big problem when she urinates, partly because it will be wet and you also need to feel it (we have to feel it in your panties) Scooter overalls and out on the mountains. ..not so easy so what shall we do.

Children are also not the kindest little creatures on earth, children can be really mean to each other and I want to be able to help her in good time so she avoids this problem at school.

When I was little my biggest dream was to become a doctor, it's a shame you weren't smart enough to become one but maybe I am after all, I have a unique way of thinking and it's the concept of CURE that lies deep in me, so I thought man hundreds of years ago and still today with some and in some cultures and among naturopaths.

Wish me luck tomorrow, guess if I'm tired of fighting and fighting again…