Among Friends

[Q4u]

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@Perkup wrote:

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@Q4u wrote:

Thank you Lilac-Tree, I will seek out your recommendation.  As someone who has (it never goes away) Pulmonary Sarcoidosis that went into remission, I am always eager to learn more about auto-immune diseases, especially what affects me personally.

At the time of my diagnosis I tried and tried to find info on what I had... to this day it still has a vague definition but back then I found ONE paragraph related to it in the library and believe me I searched.  I still do searches regarding it and although there are now support groups and better definitions, they still don't know what goes heywire to cause this....

Thanks again....  

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I was so glad to see your post.  I have a daughter with Sarcoidosis, and both she and I would like more information than has been readily avaialable.  I will look into getting this book right away.  Perhaps we can exchange information from time to time.  Her diagnosis came from a rash that began to develop on her knees.  To the best of our knowledge it has not attacked any internal organs at this point.

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My very best to your daughter.  I remember feeling so alone in this diagnosis and today there are many support groups and I found some on Google you may wish to look at...

https://www.google.com/webhp?sourceid=chrome-instant&ion=1&espv=2&ie=UTF-8#q=sarcoidosis%20support%2...

I am always available with as much information as I have and am more than willing to share.  I remember being told that many of the treatments are much like how cancer is treated.  At least there are successful treatments.  Keeping on top of check ups, seeing an opthamologist (they can "see" the illness in the eyes), eating right, having enough rest, all important.  

Even now, over 20 years later, I am a curiosity and the doctors I see are very interested in my story.  I just wish there was more information out there by now....       

[feline groovy]

@Q4u wrote:

Thank you Lilac-Tree, I will seek out your recommendation.  As someone who has (it never goes away) Pulmonary Sarcoidosis that went into remission, I am always eager to learn more about auto-immune diseases, especially what affects me personally.

At the time of my diagnosis I tried and tried to find info on what I had... to this day it still has a vague definition but back then I found ONE paragraph related to it in the library and believe me I searched.  I still do searches regarding it and although there are now support groups and better definitions, they still don't know what goes heywire to cause this....

Thanks again....  

((( @Q4u )))

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[feline groovy]

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@LilacTree wrote:

I just read this book.  It is totally up to date and well worth the read.  I read from start to finish and am now again reading what is pertinent to my own issues so that I know them by heart.   I'm bringing it to my next doctor's appointment.  

I ordered it from Amazon last month.  Took a while to get it because it wasn't in stock yet.  However, it is now in stock.

It is geared toward women.  I highly recommend it.

"The Autoimmune Connection," Rita Baron-Faust, MPH, and Jill P. Buyon, MD. 

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Thanks for sharing this helpful recommendation, dear JSS.

I'll have to check it out, along with reccomending it to others.

Hope you're doing well, babe. 

BTW way, the couple in a neighboring room have been 'busy' for the second time in the past few hours; bless their hearts.

Feel like I need a drink. 

Or a cigarette.  

[LilacTree]

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@Q4u wrote:

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@LilacTree wrote:

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@Q4u wrote:

Thank you Lilac-Tree, I will seek out your recommendation.  As someone who has (it never goes away) Pulmonary Sarcoidosis that went into remission, I am always eager to learn more about auto-immune diseases, especially what affects me personally.

At the time of my diagnosis I tried and tried to find info on what I had... to this day it still has a vague definition but back then I found ONE paragraph related to it in the library and believe me I searched.  I still do searches regarding it and although there are now support groups and better definitions, they still don't know what goes heywire to cause this....

Thanks again....  

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Sarcoidosis is mentioned but not in detail.  However, what I found are so many symptoms of other autoimmune diseases that I may have . . . at least six others!  I have always been disappointed that the RA docs I've seen have never even asked me about them.  It makes me wonder if they even know how connected all of these autoimmune diseases are.  Hand out meds, that's all they do.  If I mention other symptoms they just attribute them to RA or prednisone.  This book connects the dots!!

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I am so sorry to hear that others have this problem as well.  I can tell you the series of events that lead up to Sarcoidosis.... which doctors have found interesting.

I was repairing a pair of jeans for one of my boys with a needle & thread.  The back of the needle kept puncturing the top of my thumb (not uncommon when sewing thick fabrics), so I had openings (that bled) on my right thumb.  I noticed my little dog licking funny like her teeth were bothering her so i went over and lifted her lip with my thumb and couldn't see anything.  Within six hours I had THREE lines going up my arm from my thumb!  One was almost to my underarm lymph nodes.  DH rushed me to the emergency room.  They gave me antibiotic and sent me home to see my doctor the next day.  The lines started to recede and fade.  The doctor didn't think the Sepsis traveled to my lymph nodes.  A couple of weeks went by and my thumb did not return to normal.  I gave it another week and went back to the doctor.  They took extensive blood tests and found I had two concurrent bacterial infections.... one they said (and was not yet treated) was an ancient bacteria not seen in modern days! Okay....  they then gave me a super-duper dose of antibiotics and it cleared up entirely.

Meanwhile, over the next YEAR, I had 8 strep throats, 3 Bronchitis and finally a bad case of Bronchial Pneumonia.  And at that time they took X-rays and found my chest lymph nodes were the size of lemons!!  It was at this point they were talking about Lymphoma, Hodkins and/or Leukemia.... all not good.  I was put on STAT testing. Meanwhile, the Sarcoidosis was starting to remiss!!  All the testing came back inconclusive and I was finally set up for a biopsy.  That occurred but they found that the lymph nodes were returning to normal and they couldn't get a sample from my neck and had to go into my chest for a sample.  When it came back from the lab it said that I had Pulmonary Sarcoidosis.

I went to my Pulmonary doctor for check ups for 18 years!  In that first year I became a "curiosity" with every doctor I visited, all the while I was remissing.  All my lymph nodes returned to normal and I was told often how rare and unusual for this to happen.  Grateful!!  And I still thank God every day.

The doctors feel that the Sepsis DID indeed get into my lymph nodes and that was the catalyst for the Sarcoid.   They still don't know for sure, but it is my guess as well.....   

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My worst fear is infection.  More than any other scourge.   My immune system could not fight that kind of infection!  You must be very strong otherwise to have successfully fought all of these infections for so long!!  Kudos to you . . . you saved your own life!! 

Most docs don't know very much about autoimmune diseases.  I don't understand their lack of interest in this ever-growing condition.  We have to be on guard ourselves for everything that happens to us.  Sepsis should be their first priority these days when antibiotics are so much less effective in treating MRSA, sepsis, and other infections.  I am happy for you, as it could have easily been a tragedy instead. 

[LilacTree]

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@feline groovy wrote:

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@LilacTree wrote:

I just read this book.  It is totally up to date and well worth the read.  I read from start to finish and am now again reading what is pertinent to my own issues so that I know them by heart.   I'm bringing it to my next doctor's appointment.  

I ordered it from Amazon last month.  Took a while to get it because it wasn't in stock yet.  However, it is now in stock.

It is geared toward women.  I highly recommend it.

"The Autoimmune Connection," Rita Baron-Faust, MPH, and Jill P. Buyon, MD. 

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Thanks for sharing this helpful recommendation, dear JSS.

I'll have to check it out, along with reccomending it to others.

Hope you're doing well, babe. 

BTW way, the couple in a neighboring room have been 'busy' for the second time in the past few hours; bless their hearts.

Feel like I need a drink. 

Or a cigarette.  

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Well, my hope for you is to get out of that environment as quickly as possible.  You're a strong JSS and I know you will !!

[LTT1]

@LilacTree@feline groovy@Q4u@Perkup@Scooby Doo

Thank you so much for this recommendation! 

I purchased it yesterday from Amaz and started reading ... It was hard to put down!

[LilacTree]

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@LTT1 wrote:

@LilacTree@feline groovy@Q4u@Perkup@Scooby Doo

Thank you so much for this recommendation! 

I purchased it yesterday from Amaz and started reading ... It was hard to put down!

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I'm glad you agree.  It's for anyone with AI diseases or a loved one with them.  I read almost the whole book in one night, finished it the next morning.  Now I'm rereading certain chapters and subject matter that affect our family.  We are almost all affected by AI diseases.  I will have a lot more ammo the next time I see an RA doc who just blows me off!  I hope you have noticed the huge amount of resources they have used in compiling this book.

[LilacTree]

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@Perkup wrote:

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@Q4u wrote:

Thank you Lilac-Tree, I will seek out your recommendation.  As someone who has (it never goes away) Pulmonary Sarcoidosis that went into remission, I am always eager to learn more about auto-immune diseases, especially what affects me personally.

At the time of my diagnosis I tried and tried to find info on what I had... to this day it still has a vague definition but back then I found ONE paragraph related to it in the library and believe me I searched.  I still do searches regarding it and although there are now support groups and better definitions, they still don't know what goes heywire to cause this....

Thanks again....  

---

I was so glad to see your post.  I have a daughter with Sarcoidosis, and both she and I would like more information than has been readily avaialable.  I will look into getting this book right away.  Perhaps we can exchange information from time to time.  Her diagnosis came from a rash that began to develop on her knees.  To the best of our knowledge it has not attacked any internal organs at this point.

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Yes, absolutely.  One of my teenage granddaughters has developed plaque psoriasis, she is only 16.  She's very self conscious about it.  It does come and go, but mostly very visible as it's on her forearm.  I'm not sure how we would know if and when it attacks our internal organs . . . but probably not soon enough, and they have no clue how to treat it anyway. 

I know it has attacked my gastrointestinal system.  Not sure about organs like heart, pancreas, gall bladder.  I do have a very cystic liver.  But I'm 78.  It's the youngsters I worry about.

I do believe sarcoidosis is one of them that can go into remission for long periods of time.  But it can also travel.  My thoughts are with you and your daughter.

[sydsgma1]

Thanks Likac for the recommendation. I loaded it on my kindle and have read a bit. I realize how lucky I am to Hanover such a good rheumatologist. Early he spent an hour with me explaining what ra was and all of the ramifications. He continues to educate me any time I have a question. 

I found agreat online support group. My RAteam.com. 

(((Hugs))))