Undiagnosed auto immune disease, put on Leflunomide

I HAVE UNDIAGNOSED AUTOIMMUNE DISEASES. IS THERE SOME WHERE ONE CAN FIND MORE INFORMATION. THANKS TERESA

Hi Teresa @quiteachiver75 -- You ask a great question that a lot of people are asking. Unfortunately I don't think there is one answer. A person has to do a lot of reading and research on their own symptoms. This discussion you posted in is a good place to start.

Are you able to describe or talk about your symptoms or the conditions that you have? Hopefully other members with similar symptoms will be able to share their experience with you.

Mayo Clinic has some information that I think can get you started. I like the information under the Prevention heading in this link below.

Primary immunodeficiency
-- https://www.mayoclinic.org/diseases-conditions/primary-immunodeficiency/symptoms-causes/syc-20376905

I really need to post because I’m going crazy!! Quick review of symptoms. Last March- weird sensation under my left arm like a pea in my armpit that grew to the size of grape but x-ray clear. Throughout last year that feeling continued with flank pain on the left side and my vision blurred randomly. All lab work and biliary/kidney US clear.
January this year- left armpit pain is about unbearable. Continued flank pain but also some lower breast pain bilaterally. Mammogram and US negative. At follow- up Flu swab done for new onset nausea. Flu +, placed on doxycycline and tamiflu. 2 days later I had strong electrical pulses running from heart to my neck and a rash on my left shoulder determined to be shingles. Prednisone and valtrex added and doxy stopped. Symptoms continued and several appointments later H.pylori test done and came back positive. Prevpac completed. Intense pain and itching started in my neck and jaw. Moved through my chest and down to my ground and left lower leg. I then tested + for mono. Here we are in June. I have the same pains As before but now also in my wrist, right hand, and back and tachycardia that comes and goes (158 resting) Lupus, RA, Lyme all negative. ESR normal. Abdominal and pelvic CT normal. Chest x-ray normal. All EKGS normal!! I’m taking Motrin only and using hot and cold compresses but nothing is helping and I’m just getting worse. Someone please help.

Hello @crazey22, welcome to Connect. Besides the pain and anxiety it must be terribly frustrating not being able to get to the bottom of your health problems and find a treatment that helps. Have you thought about getting a second opinion? Mayo Clinic is really good at diagnosing hard to diagnose health conditions. If you would like to seek help from Mayo Clinic, contact one of the appointment offices. The contact information for Minnesota, Arizona and Florida can be found here http://mayocl.in/1mtmR63.

You mentioned tachycardia that comes and goes. Did your doctors suggest any cause or treatments?

Good info about different viruses that cause Mono...
https://www.cdc.gov/epstein-barr/index.html

The symptoms that you describe sound so much like what my daughter and I have experienced. We were tested for Lyme Disease with a test from the CDC...the usual one used in hospitals and clinics. We tested negative for Lyme. Then...we went to a Functional Integrative Medical Doctor and she used a test for Lyme called ISAGENIX. Both of us tested positive on several strains of Lyme. We learned that antibiotics actually make Lyme worse before it gets better, but antibiotics are THE treatment needed. There are actually Lyme Literate doctors scattered throughout the country. There is one in Mankato, MN and another in Columbia, MO. It would DEFINITELY be worth your time and money to get a consult with one of these doctors. They alternate antibiotics and use tons of supplements...and finally, you will get your health and your life back. There are Facebook pages dedicated to this as well since Lyme patients have so many struggles and they need to collaborate for answers. I feel VERY strongly that this is what you are dealing with since you have all of the symptoms. Best wishes....

@crazey22 -- I think @vickiekay may be referring to the IGeneX test. Here is their website with more information:

https://igenex.com/ -- There is also an announcement with details of the test here:
-- https://www.businesswire.com/news/home/20171016005904/en/IGeneX-Introduces-New-Diagnostic-Tests-Lyme-Disease

Thank you!! I’m going to ask my doctor about this! I am absolutely miserable. I need some relief. Thanks again!!

Hello! I'm so sorry you are still working on a diagnosis. I have lupus and went a similar route. I was diagnosed as early connective tissue disease in 2009 due to miscarriage, ANA, joint pain, fatigue, etc. In 2011, the psoriasis began and I was finally diagnosed with psoriatic arthritis. After many med changes, I landed on azathioprine which has fairly well controlled it and had to change rheumatologists who changed my diagnosis to lupus....although she says it could be a crossover of the two. I am also sun sensitive and get random mouth sores. I nap once a day if I possibly can. Also, my mom has lupus. Hold on. I know it's frustrating, but don't give up.

I would also like to agree that you should check out the Lyme's route. I was bitten by a tick last year and ended up with Rocky Mountain Spotted Fever. My doc treated it with antibiotics...heavy doses and I was lucky to recover. It was awful.