Hello all,
I currently see a rheumatologist that I am starting to feel doesn't know what he is doing. It has been 2 years and even though my blood work comes back irregualr, ANA pos., PANCA pos, and other things, he says he doesn't know what it means and gave me a diagnosis of fibromyalgia. I am seeing a new rheumatologist in a couple weeks, but am wondering if between my bloodwork and symptoms if this could be lupus? I have terrible hand pain and swelling, raynouds, nerve, musle pain and tenderness, fatigue, randomn night sweats, headaches, skin sensitivity, abdominal sensitivity and bloating, and others. I just want a correct diagnosis so I don't take things I don't need to. I know i need to see the doc, I am only looking for opinions! Thanks!
Many people who have one autoimmune disease have another one also. I have to say after reading what you wrote I thought of Celiac. I have Celiac and I had a horrible skin rash, raynauds,fatigue, bloating, migraines, night sweats etc. before being diagnosed. You may want to be tested for it.
A positive ANA plus symptoms is often a good indicator of Lupus, but you can get a false p Dositive. Many of your symptoms sound familiar to how I felt before being diagnosed with Celiac disease another auto immune disorder - People with Celiac are often dx with other auto immune diseases such as lupus. You should get a screening Celiac screening starts with a blood test and if it is positve you then get a biopsy of your small intestines to confirm the diagnosis. definately see another dr for a second opinion
Definitely get a 2nd opinion. I have Fibromyalgia but know there is more going on than just that but according to my rheumi he too does not know. I am not on any medications but here's what I do for myself:
try to eat healthily - I take in no more than 1400 calories a day usually am under by a few hundred daily, I do eat whole foods.
exercise no matter how horrible I feel - yesterday I got in two hours of exercise and I do what I can handle constantly fighting through the pain.
I allow myself to sit down and take breaks as needed.
I am on iron, B12, and vitamin D. I also take Klonopin to help with my insomnia.
I use heat and cold to help manage swelling. I am personally immune to most typical narcotics and the concoction I have to take to help eliminate even a little of pain is not recommended.
I do yoga and meditation. I also write and cook for fun.
If you do in fact have lupus it's important to get it diagnosed so that you can be proactive about your treatment plan. As you probably know the body attacks itself and the only way to stop it is to stay ahead of it. My mom has lupus and it attacked her kidneys and she had a transplant a year ago. She messed around for way too long with a "bad" rheumatologist and it got her nowhere. The one she sees now is excellent. So, if you are unhappy with your doctor a second opinion never hurt anyone. I don't care what kind of Dr it is you have to be happy and feel confident they are giving you the best treatment plan possible. I hope it all works out for the best for you. I hope it's not lupus and it if it you can do it! Stay on top of your meds. Best of luck to you!!!
It definitley sounds like a 2nd opinion is in order.
I have a borderline auto-immune disorder as well as Fibromyalgia. But I HATE to say the word and like to live my life as though it will get better.
I do several things for my health:
I take 30 mg of Cymbalta, this helps a lot with pain management, arthritis, muscle and joint type pains.
I do Yoga - cannot say enough about how helpful that stretching is.
I do Accupuncture. When Western medicine did all they could for me, I tried Eastern.
I eat right and sleep at 8 hours every night. If I miss even one hour, I nap.
Boost your immune system with green drinks, eating dark berries and grapes, etc.
GL!
The skin sensitivity jumped out at me. My mom has sclerederma, one of the more rare auto immune diseases in the Lupus family, and it affects the skin in addition to the joints and other symptoms. It took several months for her to be accurately diagnosed, although it sounds like you've been dealing with it for years. Good luck.
I would go to University of Michigan. I have an autoimmune disease and they did a very thorough job diagnosing it. My rheumatologist there was Mariana Kaplan. I don't have lupus but I believe her specialty is lupus or at least some form of it. I am sure they are all good there though.
Sounds like this could be the case. My sister has lupus and dealt with this issue. Glad you are getting a second opinion.
Medicine is an art as well as a science. Some doctors have a knack for diagnostics, some don't. If you feel like your current doctor is not working for you, find someone else. It's your body and you have to live with it. I have auto immune issues and see a doctor I like here in town. But my diseases have become more serious so I'm going to UCLA next month to see a specialist who treats only my specific problem. It's a big step for me to do this but my future is at stake so I'm biting the bullet and doing it. I hope you find a doctor who can help you so you know you are doing the best you can for yourself.
