Hi everybody today I gut some sad news. My sister who us 37 yrs old was diagnosed with an extremely rare case of Lupus,Rheumatoid, and Scleroderma. Her blood work was high in all three of these.
All I can wonder is “why”? I was always so relieved that I was the one with lupus and not her. I didn’t ever want her to feal like I feel.
In Jan if thus year she began with symptoms,when she finally got in with a Rhuematologist he wad very in professional,rude and just put her on Methotrexate! Not even a safe dose to begin with. He did her blood work and told her she had RA. He didn’t even listen to her family history. Both my mother and het younger sister have lupus although my aunt had kidney involvement and passed away,and my moms youngest sister passed away from MS complications. Then I was diagnosed with lupus as a teenager and now my sister. This is major blow to my family but we will be strong and here for one another. So my question is to any of you here, have you ever heard of these three diseases presenting together? Anybodys experience it info is greatly appreciated. Thank you.
Thank you very much for your well wishes and knowledge. I appreciate it all. Also good luck to you!
Do you know anything about Chinese medicine? Because they do treat underlying immune issues of each and every single person,and not just a disease. It is very interesting, and I get great relief from accupunture and Chinese herbs. It’s very different from western medicine,but I believe it can all compliment eachother.
annacai autoimmune said:
Please give your sister and the rest of your family my regards. I do not know anyone personally who has these three diagnosis. But I do know people with Lupus, RA, and then an additional autoimmune diagnosis. I keep saying over and over again we would all be healthier if our docs would treat the underlying immune issues. I have three autoimmune dx - but not those three. The best of luck.
I’m really glad to hear that. Not everybody is open to alternative ways of healing. I would be interested in the Chinese movement practices. I am in a wheelchair but maybe I could make them work for me. I will look into it. Thank you.
annacai autoimmune said:
Yes Chinese medicine is an important part of my autoimmune recover plan. In addition to herbal approaches I include chines movement practices in my exercise routines - getting the bad chi out and the good chi in makes my world go round - thanks.
I’m sorry Kristi, for your family. I don’t have experience with these specific problems, but I wanted to let you know that I am praying for you, and for your sister and for all of us
I was so sorry to hear about you rfamily Kristi. The first thing your sister needs to do is find a good rhematologist and it is possible. It took me three tries to find a good one and he has helped the most especially with the lower back pain. I myself have fibro, osteoarthritis, ra, lupus and the start of osteopennia in my hips. He is understanding an treats me as whole person, not just a list of problems. Good luck to your family, my prayers are with you.
I am so sorry about this Kristi, Unfortunatley these Autoimmune issues run strongly in our genes, no way around it…That is why I get so mad as I think of the various docs, esp. Rheumys, whom I have gone to years ago, with other antibodies, wide variety of symptoms, but neg ANA (non-textbook, as they called me) and they seemed to give me meds to kinda shut me up with my symptom complaints (cause I hurt so badly) and push me outta the door…They were so frustrating dealing with that as a patient who was so young and SICK! I would say my Mom had Lupus , discoid, neg ANA till the day she passed, her cousin had it passed at the same age as my mom, and they wouldn’t pay any attention…So, I get 110% where u are coming from with being given meds, at high or ridiculous doses and no real diagnosis or answers…at one point I was 21 and so toxic from combos of meds I was swollen to the max & dangerously toxic, when I did not warrant any of that!! I am unfortunatley back at that place now, as I am 35 , and have gotten sicker but didnt have ins. for 3 yrs, have Charity care now & cant find a Rheumy. cause there are none in the hosp. where I have the charity care, UGH, so aggaravating, so here I am still miserable & sick…TODAY, though, try to not panic, and I know it is hard, but they do know so much more and there are so many different forms of treatments…So what are her symptoms? Are there any distinct Scleroderma symptoms at this time? Cause I do know that when u have 1 thing pos. many other tests can test positive too (but u don’t necessarily have that disease) , but that is just the way the bloodwork shows up w/ Autoimmune, it doesn’t necessarily mean she has full blown Scleroderma or even Lupus, It could be cause she has had RA for awhile now…Did she get alot sicker that they decided to test her for more?? I know many who have multiple tests positive from having one of the diseases…So don’t get urself too panicked and tell your sis the same, it will be OK, I am sure they will retest her often & get her on the correct dosage of meds & give her treatment options…Is she going to a good doctor at least, the same as you? Make sure u & her especially like who she is seeing, if not keep looking, getting other opinions is never a bad thing! Do not stop till u feel satisfied! Well, I am here for you, I feel your pain, I know how angry you must feel, so please if you need to chat or “vent” u know where to come, even tell yuor sister to join us, this is a great outlet and there are so many wonderful friends with alot of knowledge thru them all…We are all so similar, but yet so different too…so it is good to get advice and opinions and stories from many here, so many different forms of Lupus & Autoimmune issues are here in this group!..I will keep u & ur family in my prayers! Stay Strong Sweeetie & keep Smiling! We are warriors & we have to fight, fight, fight! Try to stay as positive as u can, for yourself and her too!!! {{HUGS}} Suzie :0)
I love Qigong–though I don’t know a lot about it. When I did my teacher training for yoga we got to practice a little every day and I loved it. I may look into learning more about it.
Thank you very much Janice. I know prayer make s huge difference.
janice said:
I’m sorry Kristi, for your family. I don’t have experience with these specific problems, but I wanted to let you know that I am praying for you, and for your sister and for all of us
Wow this us really great info annacai, I really appreciate it. Thank you. I am gonna check amazon for this book.
Also thanks fot your thoughts on the diagnosis. I think it was just a shock at first. She has a new rhuematologist now and they r thinkin that the methotrexate she was wrongly on for about 6 months may be causing these symptoms and blood readings. They ate also testing her for celiacs, so it may not be so scary ad we initially thought.
Thank you again for the info. I think Qigong is going to be great for me,and just what I need.
annacai autoimmune said:
Kristi,
I was introduced to Chinese Medicine by reading Dr. Roger Jahnke’s The Healer Within. In that book he provides a brief introduction to healing gentle movement- Qigong. He offers some basic movements for self healing that can be done when you cannot get out of the bed, when you can sit in a chair, and when you can stand on your feet.
http://www.feeltheqi.com/Dr_Jahnke/
My copy of the Healer Within is now old, and dog eared, and water stained. But it is one of the most valuable books that I own.
http://www.feeltheqi.com/taichi_qigong/healer_within.htm
Here is an example of some sitting movements
http://www.youtube.com/watch?v=dWvlCLbjVJo
May you be healed from within.
Thank you Debbie, you are right about the importance of a good rhuematomogist. And she does have one now. She is a Dr who is a partner at a ra group I was originally at. This Dr is great and has already done more for my sister in 3 wks then that other Dr did in 7 months. I am glad your Dr is helping you too. I hope you are staying well and thank you again for your kind words and prayers.
debbieayers1234 said:
I was so sorry to hear about you rfamily Kristi. The first thing your sister needs to do is find a good rhematologist and it is possible. It took me three tries to find a good one and he has helped the most especially with the lower back pain. I myself have fibro, osteoarthritis, ra, lupus and the start of osteopennia in my hips. He is understanding an treats me as whole person, not just a list of problems. Good luck to your family, my prayers are with you.