Guest guest Posted March 4, 2007 Report Share Posted March 4, 2007 I am Pam and I actually have multiple DX's and my latest one is sarcoidosis (I am not sure the type yet). I had a Biop of my right breast that showed the sarcoidosis, I also haven't had a menstral cycle in 6 months which the GYN said could be because of this (and only neurosarcoidosis has this as a symptom). Hi Pam, Welcome to the 'family.' I'm sorry you had to find us. One of the symptoms of sarc is not only the granulomas, but also disrupted menstrual cycles. You may want you gyn to run a prolactin level-- chances are you are high. This is one of the ways sarc hits our hormones. The exhaustion, fatigue, anemia can all be from the sarc. It's also important that they look at your thyroid levels, as well as ANA and TNF levels. These can be very helpful with determining what course of treatment you may need. Do visit the FSR site--www.stopsarcoidosis.org and read up on their info. This is Om Sharma, MD site for the Foundation for Sarcoidosis research. He is considered the #2 specialist in sarcoidosis. He is down at USC LA. In our ARCHIVES and LINKS-- if you scroll down, you'll see the address at the bottom of this and every email that goes out from the group. We have compiled a tremendous amount of information. Many of us have had sarcoidosis for many years--- and initially did the prednisone treatment, and when we stopped, the sarc went to multiple system sarcoidosis. I started with sarc in my eyes and lungs, and had it become systemic with bone and muscle involvement, brain involvement, sarcoid induced arthritis. I seem to run a fever daily and have for the last several years-- which is that my immune system thinks that i'm the enemy- so it is in fight mode all the time. That is the challenge of these auto-immune diseases. Because of the chronic inflammation- we tend to run a bit dehydrated, and that leads to the exhaustion/fatigue. (Which we all know is WAY beyond the exhaustion fatigue of getting the flu.) You'll find that many of us in this group where medical professionals-- nurses, midwifes, CNA's- administrators-- which for me means that we know that there has to be an answer and we're willing to search for it. We also have alot of teachers online. They are looking at the possiblity of a virus that found a population of predisposed genetically influenced people that when this took hold, it has turned on our immune system- and they haven't yet found an off switch. Know you've found a group of people that are in this together, and that if you have questions, you can ask. We'll try to help find answers. If you need to vent, laugh, whatever-- we do it here. We're now over 425++ people-- and we have 2 owners, and 4 moderators--along with our live chats-- so join in-- and if you ask a question and don't get a response right away, know that we will answer. We're all sick also, so we do "tag-team" it abit. Take care, Tracie NS Co-owner/moderator ************************************** AOL now offers free email to everyone. Find out more about what's free from AOL at http://www.aol.com. Quote Link to comment Share on other sites More sharing options...
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