I think that the doctors must have forgotten about me. Yesterday i was reading about eds for the first time in years. My husband found a eds magazine... i have been getting them for awhile. For alot of years i have not really been reading them, as i though most of what was in them did not apply to me.... Yesterday i read one and i found that with Ehlers Danlos syndrom type III or hypermobile type i need to get my heart checked... why didnt anyone tell me this when i got my diagnose... I kept reading up on eds and also read on the danish health departments guidelines about eds, and it looks like i should be checked once in awhile.. Since i got my diagnose, 10 years ago, written on a little piece of paper with the words "Ehlers Danlos syndrom type III " i havnt really heard anything from the doctors, they gave me a pamplet from the eds assosiation in denmark, told me that my dream of beeing an actress was to much for my body and that was it... A few years later i wanted to talk to someone about the risks, if i wanted to get another child. I was refered to an old guy that was suposed to be an expert on EDS, but he knew less than me it seemed, and when i asked him if i should see anyone for my EDS in genneral, he said no, there was no point in me seeing anyone about my EDS. So i have never had a heart exame, or talked with anyone about the problems that my EDS is giving me. I feel to betrayed by the doctors right now. Growing up i saw a bunch of doctors cause i was in pain, my mother belived me, but that was it, they all thought i was hypercondriac. The only doctor that belived something was wrong, was my peadiatrician, and it was him that told my mother and me where to go years after, when we called him for a little suport. Now i get so sad and a little scared when thinking about the things i have been through that wasnt taken serious by the doctors. I remember having stomac pains that was so unbeliveble, but no one took very serious. they gave me something for urine infection and that was it... now i realise that even tho it was an infection that must have traveled to my kidneys, having eds there is so much that it could have been that was never checked. Also when i had brest pains it want taken very serious, as i wasnt in rish of a heart attac cause of my age. I never figured out what it was, as it went away after a few days. I am happy that it want anything lethal, but i get a little scared thinking about that with eds it could have been serious, and that it wasnt checked or taken serious. 
I have just been to the doctor about my stomac, it gets all bloated and i look like i am 7 months pregnant.. I got some blood tests that didnt show anything, but i dont think that they ever considdered that it might be related to my eds. I dont know that it is, but maby, and in any case it needs to be taken in to considderence. I also have major problems with hemorides, have had them for years now, they hurt, they bleed but they just give me some normal drugs for hemoroids that dosnt work at all. Not sure if there is anything to be done about them, but maby this is normal for people with eds.. in any case it would be nice if the doctors looked in to my eds a little instead of treating me like i am all normal, cause i am not. When i first got my Multiple Scleroses symptoms i had to bring my mother along to the doctor and have her insist that i was seen by a nerolgist. At the time my skin all over my body was almost intirely numb and still i had strange feeling in my body all the time. Felt like i had vibrating tuning forks planted all over my body and that they were hit with every step or movement i made. In the end my doctor called a neurologist to hear if she wanted to see me, and she game me a time the next day. She did an exame and then called the hospital, telling them that i would come the next day for addmitence. That happend, i got a spinal test and a brain scan and there was no doubt, i had multible scleroses. 
The doctor that gave me the diagnose, suprised me by knowing a little about EDS, and as the first doctor ever he wasnt afraid of telling me that he thought that i would be able to have another child if i wanted to, as my body was in an ok shape besides the ms symptoms.(at that time i was the director of Alice in wonderland that we were setting up as a musical at my place of education) But it had to be right away before i started up on the medicine. So my husband and i got to work, and  4 months later i was pregnant with my daughter. After having her i have started on Beta interferon that is injected 3 times a week (thank god it is free in denmark).
I now get a good coctail of medicine. Rebif44 (beta interferon) 3 times a week, Ibuprofen 600mg, pinex 1g(paracetamol), Modiodal 100mg to prevent me from getting so tired all the time, Imipramin DAK 25mg for nerve pains. But atleast they are following what is happeing with my MS. I have MS attaks, but i also get worse graduatly, but i think i am in the light end... i think.
Guess my next move is to get my doctor to refer me to someone that knows what i should be checked for (eds wise), and then demand that i get a heart exame.

mood: disappointed