So I’m still in the “figuring out what’s wrong you stage, but all signs point to Sle lupus” stage. Also I’m in the process of finding a new Rheumatologist. Last month they thought it was Rheumatoid Arthritis, then they actually looked at the blood work and I started with the fatigue and random fevers and swollen glands. Now they want to treat my inflammation without labeling me with Lupus. I have started the prednisone/plaquenil regiment and I’m supposed to see him again in 6 wks. Get more blood work at 5 weeks. And I was wondering what advice people have to get more information, like websites, books, stories, remedies. Also how and who should I tell? I have told my immediate family and friends. I would appreciate any information/advice.
LFA-Lupus Foundation of America is a great website!! When I was first dx I only told my better half.. Actually I was in denial. I went through stages lol. But I finally came to accept that this is my new normal for me. So now everyone in my family knows. Also read or watch on YouTube called the Spoon Theory. I gave the YouTube link to my family members and had them watch it. Great explanation of how our life is on a daily basis. Also on the LFA website there is a place for family to read to help them understand Lupus.
I, too, am still in the early stages of trying to understand all this after having been diagnosed with lupus about six weeks ago. My partner found a great book that has been a tremendous help to us. I highly recommend it to anyone who is trying to understand lupus and the autoimmune diseases in general. It's The Lupus Book: A guide for Patients and Their Families, Fifth Edition 2013 by Daniel J. Wallace, M.D. It can be purchased at Amazon for about $30 and is well worth the cost. Now that we've read it, we will continue to use it as a reference book for years to come.
Dr. Wallace is a Clinical Professor of Medicine at the David Geffen School of Medicine at UCLA based at Cedars-Sinai Medical Center in Los Angeles. His many books include All About Fibromyalgia and All About Osteoarthritis.
Let me know if you get it and what you think. Good luck!
Until you know for sure what your diagnosis is I'd wait to share this information unless it's your immediate family & close friends Sometimes it takes a while to diagnose SLE & there are many other diseases that mimic Lupus that your Dr will have to rule out. Dr Daniel Wallace has excellent books on Lupus that are easy to understand. The Lupus Foundation of America also has information. This site is a awesome source of information from those who have Lupus. Good Luck to you
Hi Jeannine
On my first visit, my rheumie diagnosed RA. He ordered blood work and saw me again in a month, and he said my blood work pointed to Lupus, although I didn't have a lot of the symptoms. He said I don't know what to call you - I have to go with Lupus. That was June '12. I believe its best to treat yourself as though you have it, if that's your first diagnosis. That was the advice I got in the first book I read: The First Year Lupus: An Essential Guide for the Newly Diagnosed by Nancy C. Hanger.
I have always stayed with that advice,and not needed to go for a 2nd opinion. Also, from the advice in this book, I searched for a support group - and LWL was the first! I wanted a face to face support group but didn't find any. This site has been a blessing for me.
" How and who should I tell?" What a good question. Go with your heart. I am a private person, I choose who I tell. I recently started a new job, and I haven't told anyone. Its none of their business. I've talked about my foot surgery - I noticeable still have a limp from time to time, and I'm very slow going down stairs. That's all they need to know.
There's a great book called 'Coping with Lupus', by Robert Phillips...get the 4th edition one. I got the first one years ago, but this one has all the newest information.
Also go to the Lupus Foundation website to check out info and possible support groups in your area. Even if you aren't totally sure if you have SLE, they might be able to help you.
Good luck
bak
Jeannine,
I spent fifteen years going from doctor to doctor and getting all kinds of therapy and wrong diagnoses. Last year I finally got tested for Lyme Disease and bingo, I've got late stage Lyme Disease. Doctors don't always test for it routinely and, when they do, they use laboratories that are not reliable. Your symptoms are consistent with Lyme symptoms. Please have your doctor run testing through IgeneX Labs. Here is the website and your doctor can order the testing kits. I insisted on being tested. My doctor, at the time, kind of brushed the idea off but I insisted and bingo. There it was, the correct diagnosis finally.
http://www.igenex.com/Website/
Good luck. I hope you get the correct diagnosis soon.
Ally
Thanks everyone for the great advice!! My Pcp tested me for Lyme in January, but I do want to get the test again. I live in Nee England and I used to be very active and take my dog for hikes in the woods. So I could’ve been bitten. The lab work came back negative for Lyme. But I haven’t had any red rings or rashes that are tell-tell signs of Lyme or lupus.
I have gotten the books everyone has mentioned and I am learning a lot. This had been a very humbling and eye-opening experience so far! I am truely impressed by the human spirit and by everyone on this blog! Thank you again!!
Jeannine,
Which lab did your doctor use? If you don't mind me asking. If you get tested again, please have doctor use IgeneX. Be strong and insist on it. It's crucial that you determine it properly because if lyme diagnosis is missed, you will be treated for the wrong thing for the rest of your life, and that will include many drugs with serious side effects. Fifty percent of people who are infected with lyme do not get a bullseye rash. I did not get a bullseye rash.
Sincerely,
Ally
Jeannine said:
Thanks everyone for the great advice!! My Pcp tested me for Lyme in January, but I do want to get the test again. I live in Nee England and I used to be very active and take my dog for hikes in the woods. So I could've been bitten. The lab work came back negative for Lyme. But I haven't had any red rings or rashes that are tell-tell signs of Lyme or lupus.
I have gotten the books everyone has mentioned and I am learning a lot. This had been a very humbling and eye-opening experience so far! I am truely impressed by the human spirit and by everyone on this blog! Thank you again!!
Thanks Ally, I will insist.
Good. Here are a couple links to read through about lyme and symptoms. You are in CT, I noticed, which is the epicenter for lyme disease.
http://www.lymediseaseassociation.org/images/NewDirectory/Resources/Printables/SymptomList_2013.pdf
http://www.ehow.com/how_6010335_lyme-literate-doctor-_llmd_.html
Note: If your doctor doesn't want to call IgeneX to get the test kit, then you can call them yourself and they will send it to you so you can bring it to your doctor.
Here's the page with phone number on it.
http://www.igenex.com/Website/contactus.php
Ally
Jeannine said:
Thanks Ally, I will insist.