Re: has anyone had the biopsy of thier heart?

[Guest guest]

I was symptomatic with some arthrmyias and sob--and do show partial heart block-- no they haven't done a biopsy- and some of has turned out to be thyroid issues-- which is being caused by the sarc hitting the hypothalmus and pituatary and adrenal insufficiency due to too many years on pred.

take care,

Tracie

NS Co-owner/moderator

Subject: has anyone had the biopsy of thier heart?To: Neurosarcoidosis Date: Sunday, April 5, 2009, 5:09 AM

were you symptomatic or not? does anyone have a heart block of abnormal ekg because of thier sarc?

[Guest guest]

I AM SO USED TO BEING IN CONTROL OF MY LIFE, AND NOTHING EVER COULD GET IN MY WAY. THAT HAS CHANGED

[Guest guest]

Zach,

It's humbling, to say the least. So many of us were typical Type A personalities-- in control, in charge, insane...

I was working for an ophthalmologist and managing a multi-million dollar practice with more than 20 employees when I firs got sick-- 60 hrs a week plus, and no one even knew how sick I was-- then I ended up on pred at 60mg a day, took 2 1/2 yrs to wean off-- did well for a 5 yrs, then the sarcmonster came back-- fully systemic, and by then I'd ended up working for the phone co-- but couldn't remember what the customer had called about, would end up on the wrong acct if I had a previous one still up in the window-- and since it took at least 3 and sometimes 6 windows to answer a problem- I was up a creek.

The docs put me back on pred at 80mg-- and it's the only time in 33 yrs of marriage that I ended up being physically abusive with my husband. It wasn't pretty....

With all the side effects of pred, they knew they had to get me on something else, so we started with Imuran. My liver function went to hell, so that was out. So we went to Methotrexate, added Plaquenil and eventually I got into a clinical trial for Remicade. It's been 4 yrs at least, and up until last summer when No. Calif caught on fire-- and we were in the thick of it-- that I ended up back in a flare that has yet to settle down.

I think sometimes it's a gift to have had to make the changes and give up the control (it was an illusion even then) but we like to think we're in control.

Embracing the new you is hard- and it will be worth it in the long run. Guided visualization, relaxation exercises, massage, biofeedback, cleaning up your diet, getting enough rest, and making sure you hydrate-- all will help with the sarc.

Sarc being an autoimmune, inflammatory disease makes it so our bodies run a fever daily, and that alone wipes you out. It also keeps you on the edge of being dehydrated. So caffeine, sodas, alcohol, high fructose corn syrup drinks-- are taboo. You have to keep your electrolytes balanced, and remind yourself that the fluids in the body, synovial to lubricate the joints, and ligaments-- make it so that if you do get dehydrated-- you're going to have more pain. Remembver that everything should float-- and that makes it easier to drink that one more glass of water or decaf tea.

There really is alot you can do to take as good a care of yourself as possible, and it is worth it.

I;ve been living with sarc for 18 yrs now-- and it's meant alot of changes-- you can fight it or learn to go with the flow-- and you've got people to help you learn how.

Sincerely

Tracie

NS Co-owner/moderator

Subject: Re: has anyone had the biopsy of thier heart?To: Neurosarcoidosis Date: Sunday, April 5, 2009, 10:05 AM

I AM SO USED TO BEING IN CONTROL OF MY LIFE, AND NOTHING EVER COULD GET IN MY WAY. THAT HAS CHANGED

[Guest guest]

They shy away from heart biopsies, my cardiologist told me it was sarc after an arteriogram/Connie

Subject: Re: has anyone had the biopsy of thier heart?To: Neurosarcoidosis Date: Sunday, April 5, 2009, 1:05 PM

I AM SO USED TO BEING IN CONTROL OF MY LIFE, AND NOTHING EVER COULD GET IN MY WAY. THAT HAS CHANGED

[Guest guest]

Zach,

We know how you feel. Most of us have had more time than you on

learning to deal with this. It will never totally go away but you will

learn to deal with it. Just know you are not alone.

Terri g.

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> I AM SO USED TO BEING IN CONTROL OF MY LIFE, AND NOTHING EVER COULD

GET IN MY WAY. THAT HAS CHANGED

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