Really Worried - Please answer

Hello Jdeet,

 

I saw your question to me in another posting. I can understand that you're worried about your brother.  Unfortunately, lupus mimicks so many other diseases, it's difficult to be able to tell you if we think it's lupus that your brother has. 

 

What other symptoms does he have?  You mentioned swelling in his ankles/feet, and the dry eyes many years ago.  That just isn't enough information for us to go on.  If you check out www.lupusfoundationofamerica.com, you'll find links to the 11 criteria for a lupus diagnosis.  He has to have at least 4 of them in order for a rheumatologist (lupus specialist) to even consider a diagnosis.  Even is he has at least 4 of the criteria, he might not get the lupus diagnosis.  It's a very frustrating and discouraging disease to have.  Most of us took many, many years to finally have enough symptoms and positive blood work to get the diagnosis.

 

It took me over a decade to get mine.  I was diagnosed when I was 26.  Symptoms started in highschool with a sensitivity to fluorescent lights, joint pain, fatigue, and really messed up periods.... Over the next 10 years, I developed more fatigue, a flu-like feeling all the time, pneumonia, etc.  A month before my diagnosis I had chronic severe anemia, pleurisy (inflammation of the lining of the lungs), and terrible heart palpitations (which turned out to be endocarditis - inflammation of the heart valves).

 

My blood work during this time came back positive for pretty much every single thing related to lupus. I had have it all! Aren't I lucky!!! LOL.  But that same blood work took years to show up.

 

When will your brother get his blood work back?  It's good to know he doesn't have rheumatoid arthritis.  That is a big relief.  Lymes will mimick lupus and vice versa, MS, Fibromyalgia, and other autoimmune diseases like chron's/colitis.

 

The dry eyes "could" be sjogren's syndrome. I have a mild case of it, and hardly ever have problems.  But I have the antibody for it.  So even though his dry eye episode happened 8 years ago, he could have this, just mild like me. 

 

Is he seeing a rheumatologist about all this?  That is important.  Also, make sure he's keeping a daily diary of all his symptoms.  Even the small insignificant ones can be a big red flag for a doctor.  If he gets any skin rashes, make sure he takes pictures of them to show his doctor.  My best advice is to keep being aggressive with the doctors about all this.  Don't give up! 

 

I hope this helps jdeet.  I know you'll get more responses from the other members. Weekends are usually slower here.

 

Talk to you soon,

Ginny

 

 

Thank you so much both of you for responding.  He had just had the ankle swelling & pain and it lasted for at least a month..he finally went to a foot doctor and he said it may be arthritis.  He had just mild blood work done at his primary care dr.  Foot dr. got the results and said it's not the rheu(abbreviated) arthritis but the blood work is showing that it is something.  Something came back slightly abnormal.  He told him to go get more blood done to see if he has lupus, lymes disease, fibralomagia(sorry knew to me so don't know spelling).  Here's the thing, my brother has a very weak immune system where he gets sick a lot. ...but that is very common in my family.  We usually are always the ones with sore throats, etc.  Other than the dry eyes problem he has no other symptoms.  He has never had a rash, etc.  I looked up the 4 out of 11 symptoms and didn't understand the names /terms of some of the symptoms listed.  Can you reassure me that if it is lupus or some autoimmune disease that there is hope to live a good life.  He just had a baby 3 months ago.  I'm really distraught ..  I'm sorry that you are both going through this.  I can only say that you must be such strong people.  God bless you!!

Hi jdeet and welcome. I'm really sorry to hear about your brother and I hope the docs can figure out what is wrong soon so that he can get treatment. Yes, we can give you hope that people can live a reasonably good life with lupus - especially if it is caught early and the doc finds the right meds that work well. I first got sick when my oldest child was 6 and my youngest was 2 and even though I get very sick sometimes, I am still able to be very involved in their lives - it just takes some adjusting your lifestyle. If your brother is dealing with any chronic illness, it's really important that he learns to pace himself and listen to his body when it tells him he needs to rest. Also, I feel like I am finally on the right combination of meds that gives me more good days than bad. I don't have the same kind of life I would have if I was healthy, but I can say that I have a very fullfilling life with my family and that is the most important thing for me. Also, if your brother does have lupus, there is always the hope of remission. Remissions are very possible and there are members of our forum who have had periods of remission. Please ask any other questions you have. I can tell how much you care about your brother and it's good that you are looking for all the information you can get. So many of these chronic illnesses share similar symptoms and that's why it can take a while to get an accurate diagnosis. Hang in there and please keep us updated on what you and your brother find out. Take care