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Old 11-05-2004, 09:22 AM   #1
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SARCOIDOSIS/Am I dying??

Hi everyone,
I posted before when we thought I had Lupus. NOPE. It is Sarcoidosis. It attacks the good cells in your body. I am one GIANT Lymph Node right now, and I feel like it. It hurts my skin to move, it hurts to walk, everything hurts and I feel like I am dying. I sweat profusely, day and night. Had to change my hairstyle to a straight hair because of sweating. Because I am so swollen I pretty much live in PJ's, and change all day, making lots of laundry, which is almost impossible to get down the basement to do it. Today the kids come home, 7 and 11. Have to change custody schedule because of my illness. I can't drive now, and wouldn't want to!!! Scary thought. I have to have my home health aid take me to the grocery store. I guess today will be the first day I drive the 'amigo'. Can't think of 'trying' to walk it. I have to go to each store on each side of the grocery. Don't think I can do it?? Anyone else have Sarcoid?? I am looking for 'someone' to talk to before I go crazy with this! I have to keep myself calm, or else my swelling goes up, and my heart races, but am desperate to talk. What are you doing for your Sarcoid? Does anything help? Do you want to talk??
Thanks,
Laurie
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Old 11-05-2004, 12:06 PM   #2
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Re: SARCOIDOSIS/Am I dying??

how was it finally diagnosed I have had these same symptoms in the past.was tested for lupus but neg. the dr calls me his mystery patient,i too had the severe sweats day and night sometimes in the daytime they would last hours and you could actually wipe sweat off with a towel and very very tired. I am just looking for answers

 
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Old 11-06-2004, 01:50 PM   #3
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Re: SARCOIDOSIS/Am I dying??

Hi. I'm sorry to hear about your troubles. My husband was diagonsed with sarcoidosis about 4 years ago. His was inside his lungs and as a result has developed pulmonary fibrosis. The sarcoid are not active now, but he is on oxygen and steriods, among other things to help him breath.

Yours sounds like more of what Karen Duffy had. She was a VJ on MTV in the early days and has written a book on her life with scaroidosis. I would highly recommend you read this book. Just type in her name into any search engine and that should direct you to her book. You could probably get a used copy cheap on Amazon. Good luck to you and someday it will be better.

Sarcoidosis is not considered terminal. Although you prob. feel like you are dying. It is a rare condition but again, there is lots of info on the web.

 
Old 11-13-2004, 11:04 AM   #4
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Re: SARCOIDOSIS/Am I dying??

Hi, Laurie,

I have sarcoidosis, although not with all the same symptoms you have. Sarcoidosis is often a self-limiting disease, which may remit in 2-3 years; however many people, like me, have found that wasn't the case for them. I do have lymphadenopathy, but not the extreme swelling and sweats you have.

Usually for cases that are causing significant problems, prednisone is prescribed. Because I have it in my lungs, I take Advair, which I have found very helpful and not a problem to take. It contains both an inhaled steroid and an inhaled bronchodilator. I felt better in a few months, after several years of feeling very badly. Most people have pulmonary involvement to some degree or another, and the disease is thought to originate there in most cases. Most people do not wind up on oxygen or severely impaired, but it does happen. I have some pulmonary fibrosis, but I do not require oxygen and it is not anticipated that I will. I have been stable for a few years, with lymphatic enlargement in my abdominal area and some really stubborn swelling in my parotid glands.

Do a web search on sarcoidosis and you will find many helpful sites with a lot of material. At present, I know of only one other book besides Karen Duffy's that is dedicated to sarcoidosis, and it was written by Sandra Conroy. It's titled: "Sarcoidosis, Medical Mystery Uncovered." She also has a website that you should be able to find in a search.

Karen Duffy has neurosarcoidosis, which is one of the most severe forms, so you will most likely not have as severe a course as she had, although sarcoidosis is pretty unpredictable. Neurosarc quite rare, as are most of the severe forms, so the likelihood that you will have a severe course is not high. It is more likely that you may have some time with a difficult course, that will either abate entirely, or that will become much more liveable with treatment. You will need to see certain specialists on a routine basis, to make sure that you are not developing some of the rarer problems. You should be seeing a pulmonologist, even if you don't have lung involvement, who will be your "case director" so to speak, and refer you to other specialists as needed. This disease is rare, and not many PCP's know much about it, and those who do are smart enough to refer you to a pulmonologist.

If you have any other questions, don't hesitate to ask!
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Old 11-13-2004, 04:41 PM   #5
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Re: SARCOIDOSIS/Am I dying??

Thanks for sharing your stories. Here is mine.

My husband was diagnosed with Sarcoidosis just over a year ago. He had all the symptoms of Lymphoma but when they biopsied one of the enlarged lymph nodes they found it was "consistent with Sarcoidosis". He has been taking prednisone and methotraxate since September of this year. He took prednisone for about 3 months when he was first diagnosed and the specialist felt he was in remission. I don't think he ever really was. One of his biggest symptoms is weight loss. He also has fatigue and night sweats. He has a chronic sinus infection. He just got back his ct scan results and his sinus infection has turned into something called panasinus which I can't find anything about on the internet, but our GP is concerned and has put him on a course of strong antibiotics and has referred us to the ENT again (where this all began.)

The specialist that is treating him is a Rheumatologist and I'm just a bit concered about the lack of information he has given us. All we know is what I have said above, and that they are watching his liver as some levels were out of whack, told me not to worry about it. He doesn't really answer my questions and I wonder if it's because he doesn't know much about Sarcoidosis. With our current medical system, the wait for a specialist can be 6 months so another opinion may be hard to get.

 
Old 11-14-2004, 04:26 AM   #6
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Re: SARCOIDOSIS/Am I dying??

Quote:
Originally Posted by sforster
Thanks for sharing your stories. Here is mine.

My husband was diagnosed with Sarcoidosis just over a year ago. He had all the symptoms of Lymphoma but when they biopsied one of the enlarged lymph nodes they found it was "consistent with Sarcoidosis". He has been taking prednisone and methotraxate since September of this year. He took prednisone for about 3 months when he was first diagnosed and the specialist felt he was in remission. I don't think he ever really was. One of his biggest symptoms is weight loss. He also has fatigue and night sweats. He has a chronic sinus infection. He just got back his ct scan results and his sinus infection has turned into something called panasinus which I can't find anything about on the internet, but our GP is concerned and has put him on a course of strong antibiotics and has referred us to the ENT again (where this all began.)

The specialist that is treating him is a Rheumatologist and I'm just a bit concered about the lack of information he has given us. All we know is what I have said above, and that they are watching his liver as some levels were out of whack, told me not to worry about it. He doesn't really answer my questions and I wonder if it's because he doesn't know much about Sarcoidosis. With our current medical system, the wait for a specialist can be 6 months so another opinion may be hard to get.
I'm sorry to hear this. You may be right; the dr. may not know much about it, since he is not answering specific questions. Even though it may take several months for a pulmonary consult, it would be worth it to ask for one and get the machinery in motion. At least he is referring your husband when necessary. It's hard to have to go after your own info all the time, but not rare. Fortunately, there are sites on the Internet, which I have found very informative and helpful, with lots of good info.

I think the term you are looking for is pansinusitis, which means inflammation (infection in his case) of all the sinus cavities on one or both sides of the nose. It's a good thing the Dr. has referred your husband back to the ENT for this, and you shouldn't delay.

Hope this helps.
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Old 11-14-2004, 04:50 AM   #7
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Re: SARCOIDOSIS/Am I dying??

Here is a page with a great explanation of Sarcoidosis from Sandra Conroy's site -http://www.nsrc-global.net/sarcoid.htm Then you can remove the /sarcoid.htm from the address to get to her home page.
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Old 11-14-2004, 04:52 AM   #8
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Re: SARCOIDOSIS/Am I dying??

Hi Everyone!
I have felt very, very sick this week and a half, which is why I haven't written. I thank you all so very much for your help and support. Over this time I have swelled more in the lymph nodes. I have probably increased by 4 clothing sizes. I am 'very' uncomfortable. My 'skin' hurts. It is pulled so tight and so fast that it feels like someone is wringing a washcloth, but it is my skin. The skin on my fingers hurts to type! The temples on my face are also swollen. My Mom was so surprised when I told her that, that she could not imagine it. I told her to imagine pressing on her temples and have her fingers sink in! Also, I now have to use a walker to walk as it has made my back and leg problem worse. I think the lymph glands are just so swollen I cannot hold my body weight up. I have done extensive research on the web, and found my sacro-iliac joint and spinal sclerosis there may very well be what is called Vertbrael Sarcoidosis. The way it is explained that it takes time as well to settle in matches exactly to mine. Besides, this whole thing was found because of my back! I also have the Granulomas (the white sand looking thingies) in my mouth. My mouth is so very very sore, as well as my throat. I cannot eat certain foods because of them. In my research I found if I get an Acid Reflux medication is will help to dissovle them?? I am going to try it asap!! But, our stores around here are sold out! I can't drive, so that makes the search harder. I can also try contacting my family physician as well?? My Rheumatologist is back from vacation in 1 1/2 weeks, and I can't wait! I have gone thru all this and finding symptoms/treatment options for myself on the internet. If I/we did not have the internet, we all would be at a loss! I am on a Quick Reply, so I will post this, and post another!
Laurie
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Old 11-14-2004, 04:53 AM   #9
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Re: SARCOIDOSIS/Am I dying??

Hi Renata!!
Looks like you and I are on here at the same time!!
Laurie
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Old 11-14-2004, 05:02 AM   #10
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Re: SARCOIDOSIS/Am I dying??

Part II
Yes, I do believe I may now know more than my Dr knows about Sarcoidosis! Now I just need her expertise with medication, as that I won't even attempt!! I would love to find some type of FEVER Reducing medication that lasts longer than 4 hours as I find my sweating increases dramatically when the Vicodin wears off. I take Vicodin for the back pain, and think it works for the other aches and pains that may accompany this disease, as well as fever. I am also experiencing short term memory loss. I was reading an online article, and saw that when there is deficiency of oxygen to the left side of the brain, it causes the short-term memory loss. Guess what?! I had a brain MRI, and there is what they call 'Incomplete Pneumanization (spelling is wrong!) of the left brain/whatever!! That explains sooooo much! So I am NOT an airhead!!! LOL!!!!! I really am trying to keep humor in the midst of all this! It is way to easy for me to slip the other way if I don't! I do believe I have Central Nervous System Involvement as I have a lot of peripheral numbness and tingling. Also, with all the problems with my sciatic nerve, I can see that playing a huge role. I also came across something called Tranverse Myelitis or something close to that. It is common in Sarcoidosis and can go on to develop Multiple Sclerosis. I will post a 3rd message and tell you about that.
Also, I am also taking Advair inhaler, in addition to the Albuterol if needed because of the swelling, etc. However, I did not know the Advair is a steroid????? I don't feel any difference with the Advair?? You do feel a difference?????
Laurie
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Old 11-14-2004, 05:16 AM   #11
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Re: SARCOIDOSIS/Am I dying??

The Transverse Myelitis from the Sarcoidosis.
The possibility of it developing on to Multiple Sclerosis in Sarcoidosis.
This week I went to the Center for Independent Living here in area. As the title suggests, they help you with Independence. Since I must use a walker to walk, cannot lift things, my legs buckle, cannot drive, in addition to many other things, I did seek help for disability there. The first person I talked to thought by just seeing and talking with me that I 'also' present as having Multiple Sclerosis. I asked him why he thought that. He said he meets with so many people with such a variety of diseases, etc., that by my symptoms and difficulties that he observed, he can see MS. So I come home and start searching. I found it in the above info I explained. Prior to any type of diagnosis of Sarcoidosis, my family physician, whose first hunches do usually turn out to be right, thought MS. We now know I have Sarcoidosis from the Rheumatologist I went to, but I will look further into the MS. I do have MS in the family which is why I am intent on following up with this.
I have thought about all the different symptoms I have had thru the years. I can actually track the Sarcoidosis to childhood. It started out with cysts/boils on the skin. I got those darn things ALL the times. In High School, it was pleurisy. After school I would get on the bus, started to get my body shook up from the 'smooth' ride it was!!! And get attacks of the pleurisy. The knife stabbers (what I called them) never stopped!! Then I had to walk home from the bus stop with those. Couldn't breathe sometimes!! The Dr had me do a (I can't think of the name . . . where they look at your intestines with a camera . . . ???). Diagnosed with Irritable Bowel. Over the years after that I have had several other things wrong, which all can be the Sarcoidosis. It just happened to manifest severely lately. In March I was off work for 6 weeks. I returned to work, but should not have. Work really suffered, and they were all over my case. In Mid-August I went down with a vengeneance (sp?). I was in bed for 1 1/2 months. No one could figure out what was wrong. Since then I have been struggling with all kinds of these new symptoms and problems. I just hope I can see some improvement in the near future! I am worried because from having it for so long, and then getting hit so much harder since August? I am worried it will not improve. Praying every day I see some improvement. I also have to say the Lymph Gland enlargement ALL OVER my body is scary. I really try not to focus on it because I can get myself scared easily. I know if I do that I will only feel worse. The feeling worse part is bad enough that I am remaining calm and NOT letting my mind run away!! That is how bad the bad can be! Anyway . . .
The novel is finished!!
Oh, Ranata, thank you for the link!! I will go there and check it out!!
Laurie
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Old 11-14-2004, 06:04 AM   #12
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rivkah HB User
Re: SARCOIDOSIS/Am I dying??

my sister was diagnosed with sarcoidosis about 2 years ago after having legionnaire's disease. they discovered the sarcoid after doing a biopsy; it's focused mainly in her lungs but the doctor's also suggested it could be affecting the liver and the heart. she's a lot better physically than she was when she was first diagnosed; she's slowly getting her strength back up, by walking a little bit nearly every day, etc., and we're hoping that she'll be able to go back to work next year.

sarcoidosis will not kill you - it's a pain in the ***, and it may take you a while to recover (you'll have to start putting yourself first, and make a real commitment to getting better), but you don't die from it. firstly, make sure you've got a good doctor who understands your problem and is going to be with you for the long haul. and don't try to push yourself - trust me on this one.

if i think of anything else i'll let you know take care and good luck.

 
Old 11-14-2004, 10:45 AM   #13
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Re: SARCOIDOSIS/Am I dying??

Thanks, perhaps we'll try another specialist and wait it out. We're also thinking of trying a Naturopath.

 
Old 11-20-2004, 02:11 AM   #14
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Re: SARCOIDOSIS/Am I dying??

Hi everyone.
I have swelled a little more. The muscles in my hip are not holding me up hardly at all. I can only stand/walk for not even approx 2 minutes. The muscle spasms are that bad. I feel like I do have a girdle around my rib cage to my back. The spasms are coming thru my medication. I have been trying to do exercise, but my throat is so swollen, it feels as if my throat is being cut-off and I can't breathe. I am even uncomfortable sitting reclined back. I have to sit straight up.

I typed up my symptoms and problems to mail into the Dr before my appt on the 29th. I thought that way she can read them and have a better understanding of all that has been happening since my last appointment. She was gone on vacation to India since the end of October, so she has not been there for me. Can't blame her, though. She has a 4 month old, and she went home to show off the baby. My symptoms list is a few pages long, as it lists 'everything'. I hope that doesn't bother her!

The kids are home this weekend. I saw another post that said I have to put myself first and concentrate on only getting better. Thank you! What my husband suggested was the kids stay at their Dad's thru the week, and come back home here on the weekends, which will give me more time here at home to rest, and work on getting better. He is a gemstone!! It is helping. Only problem is the ex. He is planning on Christmas I will have them the whole holiday. I cannot manage them home the whole holiday. The weekends leave me dead. My kids are ADHD, and the Psychiatrist says my 11 year old daughter is almost 'untreatable'. She is also bi-polar. She is on the highest meds available, and is a piece of work! Very emotional. Talks over anyone else, and gives NO regard to anyone else but herself. Very tough to handle. I think the ex forgot 'why' we are changing the custody schedule like this. He is thinking more of himself, just like my daughter. I have to stand up for myself on this one.

Anyway, it is 4:10am, and I can't sleep. The muscle spasms wake me up at night. Thank you all for replying! I am going to check out Karen Duffy's story as well. Also, look into a pulmonologist. Wow! What a spelling!
Thanks, and take care all!!
Laurie
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Old 11-27-2004, 06:50 AM   #15
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Exclamation Re: SARCOIDOSIS/Am I dying??

Quote:
Originally Posted by LaurieCrochets
Hi Everyone!
I have felt very, very sick this week and a half, which is why I haven't written. I thank you all so very much for your help and support. Over this time I have swelled more in the lymph nodes. I have probably increased by 4 clothing sizes. I am 'very' uncomfortable. My 'skin' hurts. It is pulled so tight and so fast that it feels like someone is wringing a washcloth, but it is my skin. The skin on my fingers hurts to type! The temples on my face are also swollen. My Mom was so surprised when I told her that, that she could not imagine it. I told her to imagine pressing on her temples and have her fingers sink in! Also, I now have to use a walker to walk as it has made my back and leg problem worse. <snip> . I can also try contacting my family physician as well?? My Rheumatologist is back from vacation in 1 1/2 weeks, and I can't wait! I have gone thru all this and finding symptoms/treatment options for myself on the internet. If I/we did not have the internet, we all would be at a loss! I am on a Quick Reply, so I will post this, and post another!
Laurie
Hi, Laurie,

Sorry, I haven't been on the boards for quite a while - I watched for you for a day or so, but lost touch after that.

Is your swelling all over - I mean your entire body, not just in the lymph areas? If so, this sounds more like edema than "just" lymph node swelling and can be quite serious, even more so than lymph node swelling. I ask this because you mention your fingers and your face. My face is swollen near my parotids, in my neck, and the back of my neck, but near the temples is not a place to ordinarily find swelling of that type. If your entire face is swollen, instead of just lumpy in certain areas, this sounds more like edema, and you should really see a Dr. ASAP. Your description of going up 4 dress sizes is alarming. I know that your appt. with your other dr. is on Monday, but even so, IMO you should call your family doctor TODAY and describe your symptoms and see if you can get an appt. If s/he is not in, try if you have an urgent care center, go there, or if nothing else, call your local ER and describe the symptoms to them and see what they say. Often, edema is the result of cardiac insufficiency, so you can see why this should be looked into as soon as possible. I hope this doesn't alarm you, and it is entirely likely that your problem is not related to your heart, but it is far better to be safe than sorry!

I'll be praying for you!
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Last edited by renata77; 11-27-2004 at 07:12 AM.

 
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