worried about daughter

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Galileo
Veteran Member


Date Joined Nov 2008
Total Posts : 696
   Posted 3/5/2011 12:39 PM (GMT -6)   
Hi. I've decided to slide over to this forum. I'm usually down on the prostate cancer board (I'm a survivor, doing fine in that regard, btw).

Here's what brings me to you folks.
My daughter who is 21, is going to see a rheumatologist in a couple of weeks. She's had or is having the following:

Pericardial effusion/pericarditis
Raynaud's
Weight loss
Periods of extreme mental fog--very distressing to her.
Joint pain
Facial rash
Feeling of tightness in esophagus when eating
Edema (swollen ankles and feet)
Fatigue
Depression

and she recently had a positive ANA test. I think she's been tested in the past before with negative results.

When she went to see a cardiologist for the chest pain, shortness of breath, etc. he told her that it was most likely autoimmune. She is on ibuprofen (600 mg daily, I think) while we wait to get into the rheumatologist.

I'm not asking for a diagnosis over the web, but does anyone here think this could be something other than lupus? Should we be taking any particular precautions with her in the meantime? She is terrified (and my wife and I are very anxious) about the implications of a diagnosis for her future, especially since if it is lupus, it would seem that she has a severe case. Do you agree?

Thanks for listening. I look forward to your replies.

pink blobs
Regular Member


Date Joined Jan 2011
Total Posts : 54
   Posted 3/5/2011 2:25 PM (GMT -6)   
Before I begin, I must stress that many autoimmune diseases overlap or have many of the same symptoms and complications, it's not easy to pin point the exact disease, but focusing on which symptoms are worse or potentially damaging is the best course of action......

I'm 26 and have these same exact symptoms. I was just diagnosed with sarcoidosis, which is an autoimmune disease that begins by attacking the lungs. It causes inflammation and small benign growths called granulomas, and can attack the brain, heart kidneys and liver, but usually just the lungs. It seems to be common with women in their 20s, but so can lupus. Sometimes the disease goes into spontaneous remission without treatment, but treatment can mitigate possible lung damage, especially if caught early.

I went to the ER recently for chest pain and difficulty breathing. They claimed they didn't find anything and sent me off. The next day my doctor called and said they indeed found something, but that they didn't know what it was. A CT scan revealed granulomas in my chest and on my lymph nodes, which were most likely caused by scarcoidosis inflammation in the chest. Granulomas are formed from inflammation, and are clusters of cells ranging from autoimmune cells to bacteria and fungi. My doctor told me one of my granulomas was a fungus ball in my lung, and I have to have a biopsy of it to make 100% sure.

She said I also had ankylosing spondilitis which causes inflammation in the spine, shoulder joints and hip joints. This can also cause some swelling in the chest and cause difficulty breathing, but is easily treated with medication. It isn't deadly. I'm guessing that the biggest cause of my chest symptoms is from the fungus infection. It is something that can happen, not just in sarcoidosis, but in other autoimmune diseases. If such granulomas are found to be an infection, the treatment is antifungals and antibiotics. Chest x-rays are usually the first test to find them in the chest.

You noted that your daughter was diagnosed with pericarditis. How did they find this? If they have done a CT scan or x-ray, she probably doesn't have granulomas and is suffering from only the pericarditis. Corticosteroids should clear it up.

I have not been diagnosed with pericarditis, although I'm scared I have it in addition to my other chest symptoms. My doctor seems sure it's the infection causing the symptoms.

It's possible you daughter does indeed have lupus, but know that many autoimmune diseases overlap and it might not be sarcoidosis either, but you might want to make sure. I don't want to frighten you, but you want to ask your doctor about any concerns you have, any additional tests she might need or feels she needs and what to expect in the future.

She needs more than anything, lots of rest. This should help a lot of her symptoms. It helps mine. You also want to make sure she has no infections. She will be ok. These diseases cause many of the same problems, so whatever issue arises, treating the problem is the best course of action. Also remind her to know her physical limits and to take each day step at a time. If she's not feeling well, she must get rest, even if it means calling into work or missing out on social events. Eating healthy and moderate exercise helps as well.

I can't say if her symptoms are severe, but they don't seem much different than mine and many of the people on this site, and I'm personally more worried about infection than just inflammation, but I'm confident that I will be fine, and that she will be also. As long as she's getting treated and takes care of herself, she will be just fine. My sister works with a girl with lupus, and she still lives a happy life. It can get rough sometimes, but she needs to be strong and relax. I hope this helps.

She's lucky to have parents like you.

Post Edited (pink blobs) : 3/5/2011 1:36:19 PM (GMT-7)


Lynnwood
Forum Moderator


Date Joined May 2005
Total Posts : 7698
   Posted 3/5/2011 5:50 PM (GMT -6)   
It could be several things other than lupus. And if those are the only symptoms and it is lupus, then it is fairly mild and is treatable for most people. There are a number of medications that inhibit the progression of auto-immune diseases, others that address various issues that arise from Lupus & other auto-immune diseases, still others that help with the fatgiue & depression,etc, etc.

I agree, the mental fog can be severely upsetting. For me, mine got so bad that neuro-psych testing said I'd lost 20 IQ points!!! But with proper treatment, good restorative sleep, and a decent diet, I've regained most of my cognitive function. Many of my joint/muscle pain, sleep, depression, fatgiue, and other issues are now greatly lessened. While auto-immune diseases are not said to be cured or "in remission", they can go into quiet periods where things are almost normal.

With lupus and other auto-immune diseases, often they overlap so much it is very difficult to diagnosis with a particular disease. The important thing is to locate a rheumy that listens to the symptoms, thinks outside the box, and treats the symptoms -- that is, someone whose primary goal is to make her feel better every day. The diagnosis is very much a secondary issue.

Hope that helps, please let your daughter know that we have other younger people here on the HW Lupus board, and she is more than welcome to join us.
Lynnwood, Lupus & Sjogren's Moderator
"Life is far too important to be taken seriously" - Oscar Wilde

mechiko
Regular Member


Date Joined Jan 2011
Total Posts : 82
   Posted 3/5/2011 9:36 PM (GMT -6)   
Are you my dad? Haha, just kidding. Really though, your daughter sounds very similar to me. I'm 22 and starting having symptoms when I was 18.
I agree that the brain fog is the most distressing symptom, and everything Lynnwood said about finding a good rheumy is right on. Although it's frustrating not having a diagnosis and not really knowing what's wrong, it's way better to get treatment anyways. Especially if it works! I'm finding out that there are lots of different things to try.

Kathryn

panther fern
Regular Member


Date Joined Feb 2011
Total Posts : 163
   Posted 3/5/2011 9:38 PM (GMT -6)   
Hi, as it was noted before she is lucky to have parents like you. I think anytime someone young has so many symptoms it can be so frightening, to the person, the support system and their peers.

Auto immune diseases are crazy, but they are like waves and you learn to ride them. The diagnosis over all doesn't really matter the best thing it does is it gives your daughter piece of mind that she hasn't lost hers.

I began having symptoms at your daughters age when i came home from serving in the Persian Gulf. I am 40 now, I have three children, well they are getting to be old farts...19,18 and 16. I've been married 19 years. I will say it has not always been easy, but i don't think healthy people would say it has always been easy.

What gets me through, (I have several problems along with SLE) My relationship with God, I truly have been humbled by the whole experience, my family, and friends, and understanding Dr.s that have my best interest at heart.

Wishing your daughter a diagnosis, peace of mind, a grieving process and a moving on process. For you I wish for more joy than sorrow and Hope.

Trust in the Lord with all your heart; lean not on your own understanding Proverbs 3:5
Diana

ebet24
Regular Member


Date Joined Jan 2010
Total Posts : 42
   Posted 3/5/2011 11:55 PM (GMT -6)   
You're a pretty remarkable dad! I'm still pretty new to lupus myself, I was diagnosed when I was 23, now I'm 25. Maybe it will help if I tell you my symptoms and how I was diagnosed. Fatigue, lack of concentration, depression and facial rashes started back in high school, and by the time I was 22, I was getting pretty severe joint pain in my fingers. The joint pain was what finally got me to go see a doctor because it scared me how one day my ring finger would be so swollen and painful, and then the next day I would wake up and it would be another random finger. Anyway, they drew blood and my ANA was positive. My doctor referred me to a rheumy who ran more blood work, and immediately diagnosed me with lupus after seeing that my anti-ds DNA was positive. Apparently a positive anti-ds DNA is a major indicator of lupus.

Joint pain and mental fog are the biggest symptoms I deal with now. I'm currently working on my master's degree, so sometimes the mental fog really gets me down, but I just try to never procrastinate and start on my work as early as possible since I never know when joint pain or the mental fog may get in the way. I was on Paxil and Zoloft for the depression for a while (being diagnosed with an autoimmune disease at 23 really got me down), but honestly I've had a lot of luck with St. Johns Wort. Make sure to double check with a doctor though because it can counteract with certain medications. I hope everything works out for you guys; nothing is scarier than knowing something is wrong with you, but not knowing what.

pink blobs
Regular Member


Date Joined Jan 2011
Total Posts : 54
   Posted 3/6/2011 3:28 PM (GMT -6)   
You truly are a great father. My parents are still in denial about my disease. They're worried about my fungal lung infection, but they think that's all my problems are, period. Even with a doctor's diagnosis, they still think I'm a hypochondriac and that nothing else is wrong. I have two different and distinct inflammatory diseases, ankylosing spondilitis and sarcoidosis, along with neurological problems(my doctors suspected MS), and my parents pretend they don't hear me when I talk about it. I feel alone. It's not easy to walk alone during an illness. Your daughter is very lucky to have parents that understand that she has an inflammatory disease, whether it be lupus or not. You understand the seriousness of lupus and similar illnesses as well as try to understand what your daughter is going through. Having a decrease in cognitive function is devastating, as I am sure you can imagine, but it is horrifying and humiliating, especially when faced with the dysfunction that comes with having autoimmune diseases. It's really hard on people in their 20s who are trying to complete degrees. I''m trying to finish a biology degree and I'm too intimidated by what might happen if I go back during a flare period. Sometimes my cognitive difficulties are down right embarrassing. People know it. It's like walking around with toilet paper on your shoe. Supporting your daughter will make her feel better emotionally and physically.

Post Edited (pink blobs) : 3/6/2011 6:58:00 PM (GMT-7)


Galileo
Veteran Member


Date Joined Nov 2008
Total Posts : 696
   Posted 3/6/2011 6:37 PM (GMT -6)   
Thanks to everyone for the responses so far. I'll post back when I know more!
Galileo

Dx Feb 2006, PSA 9 @age 43
RRP Apr 2006 - Gleason 3+4, T2c, NX MX, pos margins
PSA 5/06 <0.1, 8/06 0.2, 12/06 0.6, 1/07 0.7.
Salvage radiation (IMRT) Jan-Mar 2007
PSA 9/2007 and thereafter <0.1
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