Cardiac Sarcoidosis

[goodcitizn]

I was diagnosed with Cardiac Sarcoidosis 6 years ago. Over the past 6 months I have been experiencing some problem. My circulation to my legs is getting worse. I am now on Lyrica for the pain this has caused. I notice I am more forgetful and having balance issue with my legs as well. I am wondering if my Sarcoid has become active and spread. I have been noticing my vision has worsened as well and I have sudden hand and finger movements that I cannot control. I had Pneumonia and was hospitalized in October. They did a chest x-ray. Is that enough to tell if my Sarcoid is awake? I am on Methotrexate and Plaquenil. Been on them for 6 years. I was a Temple for treatment until last year. I now go to Johns Hopkins. Just got a new pacemaker/defibrilator. I am also a diabetic. So with that, can you tell me if the chest x-ray is enough to tell. If not what kind of specialst should I go to? I appreciate any insight that may help.

Thanks and have a great holiday!!!

[LadyNRA]

Oops...meant 33% white/77% black.

[LadyNRA]

Wow, I am sorry to hear about the cariac sarcoid.  I know it can cause some problems, generally more serious than the standard lymph gland located type of Sarcoid.  I got sarcoid after moving to my new region back around 1990.  Mine started with what seemed just like asthma.  Never had a history for this.  Fortunately, I live in an area that had a sarcoid specialist in the area (one of only a few at the time), and he diagnosed it quickly after looking at the dye scans.  Said this region was a hot spot for it, and that the percentages of white to black were also increased (typically 90% African American but it was more like 33% here), as was the male to female ratio.  

They didn't know what causes this and I still don't think they know...though they are leaning toward allergens at one point.  It does run in families which kinda led to that theory too.  Most folks who get this do go into remission within 2 years (it took me more than 3).  I didn't need medication of any kind.  Bad news is that blacks tend to get it longer and often more severe levels of it (though as with all people, that doesn't hold true all the time). It can effect anywhere in your body.  For instance if in the brain, it can mimic MS symtpoms.  Near a nerve--nerve pain etc.  

Also, when I got pregnant during that time, I told the doc, I don't believe in abortion so don't even suggest it. I'll manage somehow.  And he smiled and told me, 'guess what, it's a good thing you're pregnant.  The pregnancy hormones actually help lessen the effects of the sarcoid.'  Nature's steroids and all that.  He was right too.  I felt much better.  

I know folks who have had it and it went away for good, as is the case for most people.  I know folks who have had it for decades and function with it.  And I know folks who had it go into remission and come back a few years later far worse than before.  Just can't predict with it.  

I would find a specialist who is knowledgable about sarcoid AND it's effect on the heart.

[anacyde]

I know they usually do a chest xray if they suspect active sarcoidosis, since it very commonly affects the lungs.  I have no idea if that's enough to tell if it is active or not when it is not lung-specific sarcoidosis.

I've heard it can remit permanently, but I've never heard of the cardiac version.  Sorry, I'm not of much help here am I?  I would definitely see your treating physician to determine what's going on.  If you have symptoms, they warrant being checked out.

Have a happy holiday, and I hope you feel better (and get good news) soon.