Neuropsychiatric Lupus

@yelsel I’m so sorry you’re dealing with the frustration of being told you have lupus, only to hear from another doctor that you don’t have lupus. I also experienced this many years ago when I had to switch doctors as my symptoms and bloodwork had fluctuated. The suggestion I have for you is the same that I did for myself. I went to a major medical teaching university to be tested. They took 26 vials of blood and did extensive testing as well as a complete physical exam, records review and symptom evaluation. Once they concluded that I indeed had systemic lupus it was never questioned again. Of course, I don’t know your personal situation or what teaching hospital may be available to you. I hope this gives you an idea of where to pursue a definite diagnosis. If there’s anything that I can help you with, please feel free to contact me.

@yelsel and @twinkie23, I'm not sure how current this is but it does list 66 teaching hospitals in Australia if seeking help at a teaching hospital is an option - https://en.wikipedia.org/wiki/Category:Teaching_hospitals_in_Australia.

Hello, I am new here but read what you wrote switch interest @twinkie23 as I was diagnosed with lupus, then years later told by a different specialist that I didn't have it, who knows?? I do not have the finances to keep going from rheumatologist to rheumatologist but the symptoms you talk of are interesting as I have the very same symptoms, numbness tingling, and severe pain in my leg which is probably sciatica but I am at the stage where I am falling and very depressed as quality of life is so bad, my husband passed away unexpectedly 3 months ago and my balance and movement are getting worse rapidly, and I don't know what to do, I am only 62 on disability pension and live in Australia. I follow your story with interest, thank you!

@yelsel and @twinkie23, I'm not sure how current this is but it does list 66 teaching hospitals in Australia if seeking help at a teaching hospital is an option - https://en.wikipedia.org/wiki/Category:Teaching_hospitals_in_Australia.

Let me begin by saying I know how profound the loss of your husband is to you. I too, being in somewhat ill health experienced this same loss 7 years ago. The stress of your loss in conjunction with health issues is overwhelming.
I say this to let you know that your personal well-being and overall health can also be greatly affected by the emotional stress you are experiencing. Your body, already debilitated by your autoimmune disorder is now battling the emotional stress of being alone when you know your physical needs are worsening.
Work as hard as you can to maintain your mental health by staying involved with family and/or friends, and life in general. So easy to say but most times difficult to do, but keep trying. Your mental well-being is so very important to your physical health.
As far as whether you have Lupus, RA, or Fibromyalgia or in my case quite possibly all three is truly insignificant. If your joints are becoming deformed, constantly swollen, and painful, you undoubtedly have RA. That said, I have learned through the years, that whatever you have will worsen as you age and that you will probably develop additional autoimmune disorders.
I have been told since I was first diagnosed at 49, that I either had Lupus or RA but because of the chronic stiffness I was experiencing, I would be treated for RA, and for 20 years I was.
I started with a new RA Dr. Who took 25 vials of blood, tested for everything, did density testing, x-rays, etc…
He informed me my diagnosis was wrong and that I have Lupus…he started treating me for Lupus and my condition worsened…I was then told I have the big three and he was prescribing all kinds of meds to combat my disorders…in addition to some negative reactions to the meds, I felt worse then ever.
I stopped seeing that RA Dr. And did nothing, and took no meds for three years during Covid.
Last August I started with a physician’s assistant in another office…she took one look at my swollen deformed hands and said “your RA is out of control.”
She started me on the same Orencia monthly infusions I was taking for 10 years during a clinical research study I participated in 20 years prior, along with Prednisone. The only thing missing from what I took originally was Methotrexate.
Unfortunately, I have not had the same positive results as I did all those years ago. I am now 76 years old. My autoimmune conditions has worsened and multiplied. I believe I had autoimmune diseases since I was in my 20’s. I knew I couldn’t do what came easy, it seemed, to others my age, but I simply thought they were tougher than me.
I also believe the progression of autoimmune disorders is normal with age. I say don’t focus on your inabilities, just keep pushing to do what you can for as long as you can. I have slowed considerably. My house is a mess. Honestly, I try to take as little prescribed medication as possible. However, I admit to taking lots of supplements.
The treatment offered by your doctor for what he believes is the most prevalent disorder showing in your bloodwork, and you decide if the treatment is helping or not. Give it at least six months since it sometimes takes that long for the meds to show any real relief.
However, if you are experiencing negative side effects, let your Dr. know right away. If your treatment is not working tell your Dr. You need to try something else. The one good thing is, there are lots of new meds to help with autoimmune disorders.
Again, I use over the counter stuff for dry eyes, dry mouth, pain patches, lotions, oils, and supplements.
You will never be a hundred percent but you can feel better and be more able to participate in life.
Also, realize you are not in this alone. That said, you are the only one who can decide how and what your treatment can and should be for whatever you have.
Keep us informed of your progress, and best of luck.