Re: New rare disease Diagnosis

[Guest guest]

, I've heard of your diagnosis, but does that explain all the symptoms you've had?  and do you feel tons better when they do a blood draw, I thought there was another treatment for that too, to help you get rid of the excess iron? 

Or do you have Sarcoid still too?  I hope you are feeling tons better, and it's good to hear from you.  Blessings,Marla

 

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

[Guest guest]

Yes Marla, when the draw the blood of I do feel better, maybe not tons but better, anything to help me feel better at all is welcomed.. and yes I do still have sarcoidosis/neurosarcoidosis as well.. Weird eh? I have 2 first cousins with neurosarcoidosis as well.. The dx my dad with Parkinsons.. thats bull he has sarcoidosis as well.. I had my first Erythema Nososum 2 weeks ago..it didn't hurt but man it looked pretty bad when I first saw it.. it was a red raised are to my Right shin that went away on its on.. The doctor warned me that it probably won't be my last..

To my knowledge so far Marla, that phelobotomy is the only course of action.. however since I am anemic its kinda taking care of itself right now...

I'm certainly not happy that I have this crazy disease called Neurosarcoidosis nor the Hemachromatosis.. but I'm over joyed that someone listened to me and was willing to find the problem..

Hugs,

Re: New rare disease Diagnosis

, I've heard of your diagnosis, but does that explain all the symptoms you've had? and do you feel tons better when they do a blood draw, I thought there was another treatment for that too, to help you get rid of the excess iron? Or do you have Sarcoid still too? I hope you are feeling tons better, and it's good to hear from you. Blessings,Marla

On Tue, Apr 20, 2010 at 11:21 PM, <topdat1 (AT) bellsouth (DOT) net> wrote:

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

[Guest guest]

Thanks for the reminder. I have been down this road with and know all to well that you have to keep fighting for them to listen. Take caremattSubject: New rare disease DiagnosisTo: NSMods Cc: Neurosarcoidosis Date: Wednesday, April 21, 2010, 1:21 AM

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