Doctors are baffeled

[Bethrodriguez21]

I am putting everything in here because I do not know what is related.  It starts when I was 19 and became pregnant. I carried almost a month overdue and even with inducement never dialated. My cervix would not turn. At 20 my right ankle was so messed up from constant breakage and sprains I had to have it reconstructed and was suppose to do my left but never did. At 21 I had pneumonia for 6 months and kept bronchial infections for years. Arthritis also became a problem at 21 in my ankles, wrist, and fingers. Over the years I have fractured multiple bones and up until 2 years ago broke something 2 to 3 times a year. I have had breathing issues and chestpains so bad I thought I was having heart attacks. My doctor sent me to a pulmonologist who said my breathing was fine but I had arthritis in my breastbone (supposedly rare). My breast still produce a clear liquid that comes out even though my son is now almost 11. I have had diareah since Dec 2004 and not had a normal bowel since that date. I can go to the restroom up to 15 times a day. I pass mucus from my vagina as well as in my stool (huge clots of it). I have had my gall bladder removed last year hoping that was the issue and it wasn't. My pancreas has shutdown but now is working fine. I have chronic liver disease but the doctors do not know what caused it. Last year, my gyno did a laproscopy and found I have adenmyosis, hemmoraging cyst on both ovaries, fybrois cysts throughout the uterus, and a second working spleen (splenomeagly). The second spleen is fully functioning but does not show up on a CT Scan. She will not do a hysterectomy because of the second spleen. I have also had abnormal cells show up on my paps. We freeze the uterus for that. Most current problem is that in September I started hurting when I would have bowel movement. So bad I would scream, doctors thought maybe herpes, not that, so I went to an anal rectal surgon. She did her thing and found only yeast (candida) in my rectum. No bacteria, no bowel, no nothing and said it is a sign of leukimia. She admitted me because my potassium had dropped to 2.3. They got my potassium up and sent me to an infectius disease specialist. He could not figure out the problem either. Then the yeast went out of control and had yeast infection in my rectum, vagina, mouth, and skin. Before this, about 6 months before, I kept getting thrush (4 times in 6 months). Back to recent, I then was not able to urinate so had to have a cathater (lost ability or need to pass urine for about a week). Then I started going numb from the waist down and unbelievable pain in my lower back (hips). They did a spinal tap and found excess protein and white blood cells in my spinal fluid. They are not positive but said maybe viral menangitis. I still have some numbness and horrid back pain. I am always tired and my potassium dropped again to 2.7. All doctors say I have an autoimmune disorder but can't figure out which one. Most doctors state I need a "house doctor" one who will get creative and not stop until I have answers. I am only 30 and feel 60. I now keep breaking out in this hive looking rash all over, but no new meds or soaps.  I have done research and the rash I have looks like round burns to me.  Looking at the internet it resembles a Lupus rash.  I have it on my legs, arms, and now the back of my hands.  I have a huge "bruise" looking thing behing my right ear. I am tired and angry and just want answers.  Also my right knee about a year ago started swelling so severe it had to be drained.  Swelling came right back.  MRI shows crater in knee "supposedly arthritis" and the cartlidge isn't sitting right.  We have tested for RA, Lupus, thyroid, pots disease, etc....  My doctor does not want to admit failure, I guess, and will not refer me to a Rheumatolgist.  I have been referred to an Anal rectal surgon who referred me to an infectious disease doctor who referred me to a neurologist who then referred me to a hopsital.  I was admitted and kept a week.  The hospital doctor said he was at a lost and referred me to a research hospital.  I just need someone to listen to ALL the symptoms and connect the dots.  I have not worked since August because I have been so ill, and still am no closer to answers.  I am about to lose everything I have worked for because of this, and need help with some answers.  Thanks to anyone who can give me some suggestions!

[ErinBBC]

Hi,
I think you should go to www.primaryimmune.org and read about something called CVID, as well as other immune disorders, your symptoms sound very similar to mine.  I have CVID and it took me 21 YEARS to get diagnosed because CVID is so rare (only 200,000 cases in the USA) that most doctors don't know how to test for it, or have even heard of it.  I have had symptoms since I was 5 and wasn't diagnosed until I was 26.

Also some doctors think you cannot have an immune deficiency and still have autoimmune symptoms (like RA, lupus, etc.) but that is NOT true.  Many immune diseases actually cause symptoms that mimic RA, lupus, and other autoimmune disorders.

CVID and some other immune diseases CANNOT be diagnosed by 'standard' immune system blood tests!!  I had dozens of those over the years and they all came back as 'normal.'

If you read the info on the website and you think it sounds like you, you can find a doctor associated with the Immune Deficiency Foundation who can properly test you.

Hope this helps,
Erin

[iris986]

Hopefully your doctor has realized by now that test for lupus and many others don't always show true. I think you are right on about the lupus.

I have also just started testing for lupus and my first test was negative yet still my endocrinologist thinks I have Lupus and I will be seeing a Rheumatologist january 6th.

You need to be seeing a Rheumatologist as they are the ones that know what workup to do to find it.

[Bethrodriguez21]

Also, I forgot to say I also have these huge blisters in my mouth and my back hurts on and off where my kidneys are on my back.  I just do not want to leave anything out. At 21 they did a Rheumatoid test and my RA factor was 21 and I believe normal is 7-14.  My doctor at the time said it was not elevated enough to diagnose me with rhematoid.  When I saw the pulmanologist she said if it was ever raised I have rhematoid.  Not sure if that is true, but all test since are within normal levels.  Have been tested for Lupus, Pots, and I believe Chromes and was told all were negative.  I am worried on the Lupus one, because I found on the internet that the blood work is not always correct on diagnosing Lupus and if you have 4 out of the 11 signs they should diagnosis and treat for Lupus, just not sure if all this is true.