It appears you have not yet Signed Up with our community. To Sign Up for free, please click here....



Sarcoidosis Message Board
Post New Thread   Closed Thread
LinkBack Thread Tools
Old 12-24-2005, 05:42 AM   #1
Newbie
(female)
 
Join Date: Dec 2005
Location: Texas
Posts: 6
KellyinTX HB User
Sarcoidosis

Just curious how many sarcoid buddies are out there? I was diag. in 92 via lung biopsy. Since has spread into many systems. (nervous, digestive, endocrine, cardiac, pulmonary) I now have many subsequent issues: polyneruopathy, psoriasis, chronic fatigue bouts @ times, hair loss here/there, liver enzymes elevated here/there, adrenal glands not producing Cortisol and low levels of DHEA, chronic sinusitis, many allergies with chronic post nasal drip, joint and body pain. Blah blah blah huh? well...its a nasty disease and just curious who else is out there? Thanks !Kelly

 
Old 12-24-2005, 07:25 AM   #2
Junior Member
(female)
 
Join Date: Dec 2005
Posts: 21
staci_07 HB User
Re: Sarcoidosis

just curious do you have multiple lung nodules

 
Sponsors Lightbulb
   
Old 02-10-2006, 01:34 PM   #3
Newbie
(female)
 
Join Date: Feb 2006
Location: Fort Worth, TX USA
Posts: 2
yougottobekiddi HB User
Re: Sarcoidosis

Our daughter-in-law has Sarcoidosis and she is taking Chemo for it. She is also a diabetic so has several items to deal with, but she is still working every day. Takes her chemo on Friday so she can rest on the weekends.

 
Old 02-11-2006, 06:25 AM   #4
Inactive
(female)
 
Join Date: Oct 2005
Posts: 113
deepsouth HB User
Re: Sarcoidosis

Sorry to hear about your problems with sarcoid. I was diagnosed several years ago after an xray showed hylar adenopathy...enlarged lymph nodes in my chest. Fortunately for me, a lung biopsy came back negative...lymph node biopsy was positive. As far as I can tell, I don't have any symptoms. I used to get night sweats occasionally, but that has gone away since I started taking some anti-inflamatory herbs (turmeric and ashwagandha) and MSM. There is a guy named Marshall on the internet who claims to have a protocol which will cure sarcoid. The interesting thing about it is that he gives all the information for free and isn't trying to sell anything! It is a rather involved procedure that you do at home and will take months to go through...you might want to look into it.

 
Old 05-22-2006, 06:52 PM   #5
Newbie
(female)
 
Join Date: Jan 2005
Posts: 9
chacha50 HB User
Re: Sarcoidosis

HI WAS just looking to see if anyone else diagnosed with Sarcoidosis.. I have recently been diag a couple weeks ago. I have been being treated for Rhumatoid Arthritis for the last 4 years and doctor was not satified about treatment wasnt responding so he sent me to Cleveland Medical Clinic. Rhumatologist spotted nodules on my liver and brain...they want me to go back and get a lung wash and biopsy. so no treatment yet till all is done. I have diabetes, fibromyalgia, and osteo plus much more. i would love to hear more about this disease.

Thanks so much for this website.
chacha~~

 
Old 05-23-2006, 05:12 PM   #6
Newbie
(female)
 
Join Date: Aug 2005
Posts: 1
NanaW HB User
Re: Sarcoidosis

Is Psoriasis caused by sarcoidosis? If a person has sarcoidosis, will he or she get the other things you mentioned? Where can I find out more about the other diseases that sarcoidosis causes? Does anyone know what causes sarcoidosis?

 
Old 05-23-2006, 06:05 PM   #7
Junior Member
(female)
 
Join Date: Dec 2005
Posts: 14
JoshuasMom HB User
Re: Sarcoidosis

I was diagnosed with Sarcoidosis in August 2005. I have been lucky tha I feel pretty good except for a lot of joint pain.

I was disgnosed when and enlarged lymph node in my arm pit was removed because of possible lymphoma.

Kim

 
Old 05-25-2006, 11:34 PM   #8
Senior Veteran
(female)
 
Join Date: Sep 2003
Location: San Francisco, CA USA
Posts: 781
Canyondweller HB UserCanyondweller HB User
Re: Sarcoidosis

I don't think anyone knows waht causes it but it is a disease of the immune system I think as the body sets up things and the white cells go there to try and heal it. The best thing is to google it and you will have more infor than you can ever absorb. It is not that common.

 
Old 07-20-2006, 12:44 AM   #9
Newbie
(male)
 
Join Date: Jul 2006
Location: big rapids mich,usa
Posts: 4
dennis g HB User
Re: Sarcoidosis

hello,my girlfriend here in mich,has just been diag with this and i was wondering,her regular doctor didnt even know about it he said it was too new to him,she had a biopsy of the lung done and they want to do another.but said it doesnt matter mow the noduals are on her heart and lungs,they really told her go home and die,they say she wont survive it,so far she has survived cancer,lupus, and a heart condition.they dont want to do anything ,is this normal?i dont know what to do for her.i read about it on web md and it says only 10 % is really fatal. anyone know something we can do,thank you very much,Dennis.G

 
Old 07-20-2006, 11:16 AM   #10
Senior Veteran
(female)
 
Join Date: Sep 2003
Location: San Francisco, CA USA
Posts: 781
Canyondweller HB UserCanyondweller HB User
Re: Sarcoidosis

I am so sorry that you are all going thru this. I just don't know what the prognosis would be in that situation but there must be specialists that she can consult or are these the specialists. As far as being new, it is not a new disease as far as I know.I don't know what they can do. I can't give you websites to go to because they are not allowed on this forum but I think the internet is your best bet at this time. I would check all the hospitals in the nearest large cities to see if some Dr. might specialize in this or maybe a teaching hospital. Obviously she has a very weak immune system considering the lupus and other problems. Since you didn't mention what type of Drs told her to just go home I would assume it was a pulmonologist and cardiologist at least. I sure wish you both well. There may be a sarcodosis foundation if you search it out. That may be your best bet. I think you both are entitled to some better answers.

 
Old 12-17-2006, 03:25 AM   #11
Senior Member
(male)
 
Join Date: Oct 2004
Posts: 121
FoolsGold HB User
Re: Sarcoidosis

Quote:
Originally Posted by NanaW
Does anyone know what causes sarcoidosis?
As with many diseases, it is thought to be an environmental insult of some sort combined with a genetic influence.

Some of the leading environmental candidates are: a pathogen commonly found in ornamental fish tanks, a pathogen often associated with acne, a mycobacterium not fully identified, and other bacteria. It is probable that some patients might be found to have a variety of indications of prior exposure to such pathogens.

 
Old 12-25-2006, 12:57 AM   #12
Senior Veteran
(female)
 
Join Date: Apr 2003
Location: Winnipeg, Canada
Posts: 3,684
quincy HB Userquincy HB Userquincy HB Userquincy HB Userquincy HB Userquincy HB Userquincy HB Userquincy HB Userquincy HB Userquincy HB Userquincy HB User
Re: Sarcoidosis

Hi...could you state some of the pathogens suspected?

Thnx,
q
__________________
It's all a matter of perspective!

 
Old 12-26-2006, 04:15 AM   #13
Senior Member
(male)
 
Join Date: Oct 2004
Posts: 121
FoolsGold HB User
Re: Sarcoidosis

Quote:
Originally Posted by quincy
Hi...could you state some of the pathogens suspected?
Sure, but I don't know if it will be of much help to you.

One of particular note is Mycobacterium Marinarum or something like that: its instantly familiar to those who have exotic fish tanks. Another is
a class of propionate bacteria known usually for acne.

 
Old 01-05-2007, 10:00 AM   #14
Junior Member
(female)
 
Join Date: Jan 2007
Location: Texas
Posts: 10
Texasmamaof1 HB User
Re: Sarcoidosis

I have Sarcoidosis...was diag in 2003 when I had an abnormal chest x-ray...took steroids at that time and for a few weeks after....no issues with it since...unless some of my chest pain is from that and not my heart problem...
__________________
~Wendy~
34 years old

Diabetic (insulin dep)
Sarcoidosis
I.H.S.S. with pace/defib placed
Hypothyroid
Panic Disorder
Migraines
Blood Clot (sub-clav)
small stroke 10/05
ENDOS

 
Old 01-09-2007, 05:51 AM   #15
Senior Member
(male)
 
Join Date: Oct 2004
Posts: 121
FoolsGold HB User
Re: Sarcoidosis

Quote:
Originally Posted by Texasmamaof1
unless some of my chest pain is from that and not my heart problem.
I would certainly start off with the assumption that they are indeed related but I have no details as to your 'heart problem'.

 
Closed Thread

Similar Threads
Thread Thread Starter Board Replies Last Post
sarcoidosis and leg paralysis kckdottboi Sarcoidosis 8 07-21-2011 07:29 AM
seeking advice about Sarcoidosis and its many symptoms? cindy1970 Sarcoidosis 0 02-13-2008 05:22 AM
Stage 2 pulmonary sarcoidosis natedory Sarcoidosis 3 12-18-2007 11:40 AM
sarcoidosis snowflake11 Sarcoidosis 37 06-17-2007 05:45 PM
SARCOIDOSIS/Am I dying?? LaurieCrochets Sarcoidosis 37 11-21-2006 04:19 PM




Thread Tools

Posting Rules
You may not post new threads
You may not post replies
You may not post attachments
You may not edit your posts

BB code is On
Smilies are On
[IMG] code is Off
HTML code is Off
Trackbacks are Off
Pingbacks are Off
Refbacks are Off




Join Our Newsletter

Stay healthy through tips curated by our health experts.

Whoops,

There was a problem adding your email Try again

Thank You

Your email has been added








TOP THANKED CONTRIBUTORS



renata77 (2), OctaviaGreen (2), Sunsetnan (2), alicon (1), lynnsmith (1), JustTryin (1), giveasmile (1), IrishAD (1), reno2atlanta (1), sugzey$ (1)

Site Wide Totals

teteri66 (1180), MSJayhawk (1013), Apollo123 (909), Titchou (856), janewhite1 (823), Gabriel (763), ladybud (755), midwest1 (670), sammy64 (668), BlueSkies14 (607)



All times are GMT -7. The time now is 05:49 AM.



Site owned and operated by HealthBoards.comô
Terms of Use © 1998-2014 HealthBoards.comô All rights reserved.
Do not copy or redistribute in any form!