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Where I am today?

Started by Pooh, May 20, 2011, 11:42:06 AM

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Rose799

It may be a good thing that you didn't tell the dr., Pooh.  Whenever I saw a new dr. & mentioned my diagnosis of fibromyalgia, they never bothered to look elsewhere.  Who knows, maybe they were wrong about your brother?

Pooh

You are probably right Rose.  I guess I will wait until the blood work comes back before I go further with it.  Although I know tests can give wrong results on occasion, I verified with him today that they had actually done a lung biopsy and confirmed it for sure. 

Thanks Rose for the advice.
We must let go of the life we have planned, so as to accept the one that is waiting for us. -
Joseph Campbell

lancaster lady

Well Pooh ...at least you maybe now know what it is .....good news ??
I think this disease can often go away unaided , so hopefully that will be the case for you .
hope they come up with a 'verdict ' soon ........ ::)

Rose799

Oh, well I hope you'll get answers soon, so you'll know what it is you're contending with & can go from there.   I hope it's something that will resolve itself, as LL mentioned.

Rose799

Quote from: lancaster lady on June 07, 2011, 01:33:28 AM
Thankyou Rose ....
My cardio is a bit of a laugh , but very dishy !!
He reckons the reason for my 'episode' was stress related .
Which of course led me to this forum , after the Christmas I went through it wasn't
surprising I ended up in A&E.....alls well now hopefully , and my stress has disappeared whilst talking to my cyber buddies ..... :)

I can relate, LL, as I no longer need to visit my therapist, thanks to WWU...

Pooh

Thanks ladies.  I read up on it last night and it does say the majority of cases resolve on their own after 24 - 36 months.  There is about a 15% chance that you end up with it for a lifetime.  Lupus never resolves so I will take those odds!  The only difference between my brother and my symptoms is the muscle pain, inflammation and knots in the muscles (thus weird groove in arm, maybe lol).  Everything else is the same.

In researching it last night I found out that 90% of people with it have it in the form of being in the lungs and swollen lymph nodes.  It's basically is granulomas (clumps of inflammatory tissue) that form in the lungs.  It can affect other organs.  They are non cancerous (Yay!).  The other 10% get that and the granulomas can form in muscles too.  They can resolve on their own or can turn into hardened knots that stay.  That could explain my extra symptoms if I am one of the lucky 10%.  My brother just has it in his lungs so far.

But just like all my internet research over the last year and a half, I have self diagnosed myself with about 20 different things!  Lol.  I just think it very coincidental that my brother was diagnosed with that and our symptoms match on most of it.  Like everything, I will be patient a little longer........
We must let go of the life we have planned, so as to accept the one that is waiting for us. -
Joseph Campbell

pam1

Pooh, is sarcoidosis genetic? 

I hope you get answers soon, the wait is terrible.
People throw rocks at things that shine - Taylor Swift

Pooh

Depends on which web-site you read...Lol.  It looks like the consensus is yet.  Some of them read that yes, it is hereditary.  Some of them are reading, although no a proven statistic, evidence is leading to genetics playing a role.

I know I don't have this diagnosis, but it got me thinking last night about my brother after I read that.  My grandfather died in 2003, at the ripe age of 94.  I remember when I was a child, that he was diagnosed with emphysema after having a bout of breathing problems.  That would have been somewhere in the mid to late 70's.  I remember Mom remarking several years later that he never had much issues with it and I never saw him in the later years struggling to breath.  I am now wondering if he didn't have sarcoidosis instead of emphysema, and his resolved over time?

Just the way my brain works...Lol.  My Mom is out of town until tomorrow so I haven't had a chance to ask her about it yet.  I was struggling if I should talk to her about it, because...ummm....her and I are very close and she has never mentioned my brother's condition.  She knows everything I have been going thru so I don't think she knows!  But then I realized that my SD is on my FB and can see the exchange between my SIL and I about it, so I would think they are not keeping it secret.
We must let go of the life we have planned, so as to accept the one that is waiting for us. -
Joseph Campbell

luise.volta

This may be the Light at the end of tunnel! I'm crossing my fingers, ankles and eyes. Sending love...
Be kind whenever possible. It is always possible. Dalai Lama

Pen

Pooh, I find I'm rooting for one disease over another one, which is kinda weird when you think about it, LOL. But you don't want to hear that you've got "nothing" 'cos that would be frustrating and put you in the dreaded hypochondriac (or worse) category. So, I hope you find that you've got the very quick-resolving, non-recurring form of whatever it is that's giving you your uncomfortable and troubling symptoms. There!







Respect ... is appreciation of the separateness of the other person, of the ways in which he or she is unique.
-- Annie Gottlieb

luise.volta

Be kind whenever possible. It is always possible. Dalai Lama

Pooh

Ha ha ha....don't feel bad, my DH has been doing the same thing.  Up til this week he was chanting, "Please let this be thoratic outlet syndrome and not Lupus!"  Now after reading about the sarcoidosis, he was chanting last night, "Please let this be sarcoidosis and not Lupus....BUT THE MILD KIND THAT GOES AWAY!  If the severe kind...Please let it be Lupus instead of sarcoidosis!

I was laughing because he suddenly realized what he was saying and apologized telling me that he didn't mean he wanted me to have anything.  Poor fellow.

Pen, you are right.  If they don't figure it out soon, I'm going to call myself a hypo.  The one good thing (lol) I have going for me is this groove in my arm that let's me know I'm not crazy.  I have taken to saying to doctors, "You do see that right?"  just to double-check my sanity.
We must let go of the life we have planned, so as to accept the one that is waiting for us. -
Joseph Campbell

Pooh

And this lovely assessory wrist splint with the big knot on the back of my hand.  Of course, could be totally unrelated but now I'm imagining it is one of those granulomas instead of a ganglion cyst.  I'm driving myself bonkers!
We must let go of the life we have planned, so as to accept the one that is waiting for us. -
Joseph Campbell

luise.volta

Not knowing is a terrible place to be. As soon as you know, you can take action. Hang in there! Sending love...
Be kind whenever possible. It is always possible. Dalai Lama

Pooh

I will tell you that I guess I finally hit my limit last weekend.  Saturday night my hand started hurting and I noticed the knot had doubled in size from the week prior when I found it.  I went from laughing to crying in 0.6 seconds flat.  My poor DH was looking at me with a "What happened?" look and in between sobs I was trying to explain that I was just frustrated that something else had developed and that now my hand was hurting and I was beginning to think I was crazy and blah, blah, blah.....

He was so sweet and just hugged me.  He finally said, "I wondered how long it would take you to finally get upset about it all.  A year and a half?  I would have been bawling after a month of being in pain."   Later he did assure me that he could see the groove, the knot on my hand, was present for the coughing, fevers, etc. and had massaged multiple knots in my shoulder, neck and arm.  So he said if I was imagining everything, he would appreciate me not sharing my hallucinations with him any longer.  Gotta luv him.
We must let go of the life we have planned, so as to accept the one that is waiting for us. -
Joseph Campbell