View Full Version : Just don't know what else to do
01-10-2010, 06:23 PM
Hi...I am a 30 year old mom and grad student that was diagnosed with lupus nephritis stage 4 in Oct 2007. Initially, because I worked a fulltime job, I had insurance and was on Cytoxan once a month as treatment, but have not been on anything since July 2008 when I decided to leave my job and the city I was in and attend graduate school. In the last three months or so, I have not been able to absorb any foods the right way, I have had a problem with my stomach for a while (also not having a gallbladder) but the stomach issue has gotten to a point that I have often have trouble making it to the bathroom before there is spillage of stool and I am so naseus that eating has become unbearable. In the last year, I had gained a good portion of weight back from being on chemo and am wondering if I will start losing weight again because food is not being absorbed adequately. Doctors never could explain the enlarged lymph nodes all over my body, including my armpits, stomach, groin areas, and I do not know what is causing this massive (feels like it is glass cutting in my stomach) pain and am getting pretty scared that going back in the workforce is going to quite difficult as I have not been able to have a go-go-go routine in over 3 years (my last job I was allowed to telecommute 2 days a week). Thanks for any help you all can give me at this point.
01-11-2010, 05:43 AM
I am sorry i do not have the answers for you,but our members will be here soon.Thinking of you.
I honestly don't know what to make of your symptoms, as I've never had anything like them happen. This is obviously having a negative effect on your daily life, and I would seek out a specialist who can help you. Find a second or even third opinion if needed. The stomach problems and lymphatic symptoms could be indicators of something serious, and you should take this up with a proper specialist ASAP. I wish I could help you more. Please, check back and see what other members may say.
01-11-2010, 08:41 PM
welcome to the group....i know you will be able to find answers to your questions. I personally do not have lupus nephritis, but i know of others who do. I am sure they will be along soon to help you find some answers. I am on chemo, but have not had a problem with gaining weight. I have gained weight on steroids, and it is very difficult to get off....between inability to exercise, any calories that i take in stay with me. I do have similar stomach jabbing pain, and my dr. is sending me to a specialist for this. I hope you can find some relief for all of this pain.
like rob said, you should really see a specialist, and hopefully some treatment plan will help relieve your symptoms. So many of us are no longer to work like we used to, but there are some members who get enough relief from medications that they are able to continue with full time employment.
good luck, and stick around...you will find some friends here at whl.
01-12-2010, 05:47 PM
I am so sorry to hear that you are having such serious issues. I agree that it is very important that you see a specialist as soon as you can. Have you not seen any doctor since 2008? With Lupus and the many ways that it can affect us, this can be very detrimental.
At the very least, aren't there school doctors on the campus of your graduate school? It is very, very important that you are seen by a doctor. If nothing else works, go to the emergency room and your nearest County hospital. But, please do something quickly!
Let us know how you are and what doctor you've seen and what they have decided. We are here to help you as much as we can.
Peace and Blessings
01-13-2010, 09:48 PM
Hi and welcome to WHL. I don't have Lupus Nephritis either, but I do have enlarged lymphnodes throughout my body caused from a very similar AI disease called Sarcoidosis and I am also 31 years old. Have you had a chest xray to check for enlarged lymph nodes in the lungs? Your stomach symptoms sound a lot like what I deal with, and like the Sarcoidosis symtoms, but I also have IBS so it sounds like that too. I agree with Rob, you should call a specialist. I would ask your doctor to run a chest xray and possibly CT Scan to see if you have hilar adenopathy (enlarged lymph nodes in the lungs) and also a blood test to check your angiotensin-converting enzyme (ACE) levels and go from there. Based on what I have read, it seems that Sarcoid's patients who have Lupus as well mostly have Lupus Nephritis, but it is important to know that Sarcoidosis and Lupus share many common symptoms so this might an answer to your symptoms, but it might not as well. Sarcoidosis is a multi-system disease too, so based on what you described your symptoms as, I think you should call your doctor sooner rather than later.