- CASE FILE
HyPOparathyroidism. Im on a medication called NATPARA. This Med is a Band Aid and does not work well. Pain is so bad.Very Rare Disease.
ABOUT THIS CASE FILE
I'm not on this for fame or money!! I know many people have rare diseases and need help!! I have HyPOparathyroidism. If I played the lottery for Rare Diseases I won the Jack Pot!!! I'm a survivor from a Brain AVM. I was misdiagnose 2 time on that. I took matters in my hands and looked for another Neurologist. Other doctors gave me antidepressant Meds and said go on your way?!?!? I went to Duke NC and they gave me a Angiography. I was half asleep and the doctor said there it is. He knew I was half asleep and said Eric your not crazy my friend. I was lucky because it almost popped. I died on the operating table and he brought me back to life. As time went on I started to feel better and went out to surf because I loved it so and missed it so much. Then when I was out I felt very weird. Like had no energy but hard to explain??? As time went on it got worst. I went to my doctor and he said there is nothing wrong with you? So I played Internet Doctor and found what was wrong with me. I told him I had HyPERparathyroidism. He got mad and yelled at me and said I don't know what I was talking about. I said I want to go to Duke NC ENDO surgeon. He got mad at me and yelled and said I do not need surgery!?!?! I finally got in and that doctor just did a scan and said your ok!?!? I told her I needed blood test!! She said nothing!! As time went on I have never felt pain like this in my life! Every bone in my body was killing me and my mussels!! I was so scared and almost took my life!! Never have I felt pain like that and NOT one doctor I looked for could figure it out!! I went on the internet to play doctor again and found someone to help me?!?!?!? It was out of state and they said We will help and are the best for this?!?!?!?!?! The day of the operation they could not get the catheter in my hand. It took 2 hours to get it in!!! Not kidding!! I got mad and said WHAT IS GOING ON!!!! IT STARTS OFF BAD ENDS BAD!!! WELL!!! Before surgery I had one surgeon and woke up with another surgeon. I saw in her face something was not right!! I had all 3 1/2 bad glands in my thyroid. Did they cut the other gland and cut into the hair line vein and kill it?? Or rush me through because they brag how fast their surgery goes?? They said they were the best for this!?!!? All the time I waisted to get help it got worst. ALL THE FIRST DOCTOR HAD TO DO WAS CHECK MY BLOOD CALCIUM LEVEL!! The surgeon never said I had HyPOparathyroidism. They waited 9 months to see if I was going to be ok?? ""They knew!!"" I was taken tons of Calcium, Vitamin D and other Meds. I can not take all that Calcium and my kidneys would fail. So there is a Med called NATPARA. This med has only been out not for a long time?? This med is a Band Aid. It helps a little bit but there is problems with it. A daily injection every morning. I wake up in so much pain and it takes like 2 hours to feel any better. Then later on in the day I start to feel bad again. Not to say about the Calcium Crashes that happen out of the blue!! My Endo does not know anything about this!! This is so rare only 60,000 people have this. So I know more going on than my ENDO!! I'm telling him what to do? I lost my career as a Fine Dining Chef I worked so hard for and doing the things I love to do. It is a struggle to just to go to the store. The heat makes me sweat so bad and I can not sweat because I sweat out all my calcium I need. Like I said I'm on this for help for me and the other people that have this Rare Disease. Even doctors scratch their heads on this. Just looking for help. There is not much money for this because not many people have this, so it is over looked at. If I could only have my life back. I could have all the money in the world but I would take my life back before money!! People are like YEAH RIIGHT!! But when your struggling everyday and in pain they would be saying the same thing!! So tired playing Internet Doctor and it is almost 2020!?!?!? You think someone could do something???? I"M SORRY FOR EVERYONE ELSE WITH HEALTH PROBLEMS!!! Stay strong and you never know what will happen!!!