New rare disease Diagnosis

[Guest guest]

Hello guys, I've been busy the last couple of weeks sorry I haven't been able to get back with anyone during this time.. Some of you have known me for quite awhile I got sick in 2001 and I've been a member by the end of that first year.. As most of you, it took them long time to diagnosis me of anything... Vanderbilt here in Nashville was horrible, no one wanted to be responsible for giving me any kind of Diagnosis.. but eventually they had to.. they would only tell them one what they called a complaint.. So that meant if I had symptoms of whatever I'd have to wait till next visit to tell them.. So this means if I was having a heart attack.. I could only tell them, my chest hurts.. next visit 6wks later I could tell them I was Short of breath, 6weeks I could say I'm having horrible sweating spells.. all are symptoms of a heart attack.. Tracie, would tell me to sue them due to malpractice.. and I do think I could have won, I'm not completely sure that I won't do that yet.. anyway.. I finally got sick of them and left going from Vanderbilt to St where I worked for 10 years as one of their Emergency Room Nurses..

Every single complaint/symptom that I've expressed they have followed up on and have found so pretty serious reasons for these complaints.. 3 weeks ago my new doc called and said they have found a pretty serious problem.. To make the story short.. I'll just say they drew a DNA blook work on me.. to confirm that I have another rare and serious disease which is hereditary.. I had my baby brother to pass away 5 years ago due to CHF (congestive heart failure) he was 45.. he had this disease.. called Hemachromatosis which is a long word for Toxic Levels of Iron that is not able to be filtered out of my blood, and like Sarcoidosis it attacks all your major organs.. the only treatment for this is to have your Iron level checked every 6weeks.. and if your RBC (red blood cells) are high they have to draw off a pint of blood to draw off some of the iron that can not be filtered through the system normally.. I don't know if its common to have this along with Sarcoidosis.. but I believe my brother did.. he ended up with Bells palsy, he had what they called a minor stroke.. and just some of the symptoms he was having sounded very familar to me..

I'm telling you guys this to encourage all of you too "NOT GIVE UP" if your doctors won't listen to you.. then quit seeing them.. there are other doctors out there that will listen to you and will check into what's ailing you.. and if you seem to feel that they are just not interested in you or your best interest, then get the heck out of there.. don't waste another min, trying to tell them anything.. Go with your gut.. if it doesn't feel right then its not.. GET OUT!! Sometimes you have have to change 2-3 times to get it right.. but with much perserverance there is someone that will listen to you and will try to find out what is wrong, rather than trying to prove you wrong..

Anyway, thanks for listening.. if I can be of help.. let me know..

Thanks,

NS Moderator