I have been sick on and off through the years of my life. I have had many different doctors look at me and through most of my childhood I was just considered to have a weak immune systems and catch colds a lot. It shocks and amazes me to no end that some of the very same symptoms I mentioned when I was younger are now the very same symptoms that I am now being told are being cause by an Auto-Immune Connective Tissue Disease.
I got licensed as a CNA in December of 2005 when I was 20 yrs old. I was told I could never make it as a nurse because of my health issues so I stopped the medical path. I found out the following year that I had sleep apnea due to a small lower jar. The doctor felt sure this was the cause of my illnesses as a child. When I was 21 I found out I had hypoglycemia and possible PCOS and had gained weight and lost all of it and I spent the next 2 1/2 years trying to get the surgery approved to have my lower jaw pulled out. In hopes of it being an end to my fatigue and chronic migraines, from the jaw pain.
In October of 2008 I woke up in excruciating pain in my right wrist. In November of 2009 I finally got my long waited jaw surgery. I spent the next 4 months recovering. I got an infection in my jaw and my wrist continued to bother me, but I slowly got better and was happy to be done with all of this health issues. Summer of 2009 I complained to my Primary doctor that i feared my insulin may be high again as I was feeling fatigued again. He ran a few blood tests and said all was fine.
During the Fall of 2009, I went back to college I decided to go into computer technology I did really well in college this time except for an achy and swollen right wrist. I started seeing a hand surgeon in October of that year and was told I had a torn ligament in my hand. I then wasted the next year thinking I had a torn ligament when the truth was my welling was not from the minimal tear in my hand.
In March of 2010 I developed acid reflux, warm spells, and tremors. I equated the tremors to the hand pain and disregarded that it was happening in both hands. I had a barium swallow done and told all was normal I was put on Prilosec for 1 month. I kept seeing my primary almost every month about being sick and being fatigued throughout the following summer of 2010. This summer I was turning 25 I worked and went to school full-time. I wanted to get my 1st car and take advantage of the new lowered drivers insurancelol
I worked at J.C. Pennies my first retail job and I realized that being on my feet for the 4 hours shifts were too much to bare. I was having difficulties with my hand and using the register especially the touch screen registers. I only worked there for about 8 weeks. During that summer I was also working on my college internship. I found using the mouse was excruciating and decided to get a 2nd opinion for my hand.
In September of 2010, I got my 2nd opinion they did an MRI with dye it showed a minute tear. The doctor said that even though I did have a tear there was no way it was causing the swelling and pain in my wrist. They checked me for Carpal Tunnel Syndrome, but that was normal as well. The next time I saw my hand surgeon he said we were running blood tests and he told me that he thought it was some type of inflammatory arthritis. The blood tests came back abnormal but not anything specific so I was sent to a Rheumatologist next.
My Rheumatologist appointment wasnt until October 13, 2010. In the mean time I started putting the pieces of the puzzle together. I also had two planned vacation before that appointment as well. I traveled in a car for 8 hours and was pretty sick for my first vacation. It took me a week to recover from that trip. I all of suddenly found that my knees were getting stiff and was having trouble even accelerating my car to drive.
The second vacation was supposed to be my dream trip. It was a trip to New York City. At this point, I realized that I had been running fevers since January of 2010 I bought a good temporal thermometer and had this feeling that when I went on this trip something may happen. Oh boy, did something happen! I became very ill and fatigued. The thermometer was reading 103F then as high as 105.8F on the last night of my vacation. I still did everything and I dont think the thermometer could possibly be correct. I wasnt going to let whatever this was ruin my vacation.
On October 11, 2010 I was on my way home from the airport in New York to my home in North Dakota. Ironically we stopped at OHare airport in my home town of Chicago, IL. At OHare I was so ill I couldnt walk. I started violently shaking and couldnt even keep my head up. I knew this was auto-immune and was so fearful that trying to seek help may lead the airport into thinking I had something contagious. I just used my boyfriend to limp around on. I got on the next plane to get home to Bismarck, ND and it only got worse.
When I finally got home that day, I actually thought I may keel over. I saw my primary the next day on the 12th and he ran my first tests to detect antibodies for auto-immune issues. On the 13th I saw the Rheumatologist for the 1st time she also ran the same exact blood tests plus some.
When my tests came back I found out that I had organ involvement. In particular, my liver my AST/ALT was in the 60s. I had an elevated Sedimentation Rate of 88 and CRP of 27.8. I had protein and blood in my urine. I was put on prednisone immediately, and I was told that I most likely had Juvenile Rheumatoid Arthritis that had evolved into Adult-Onset Stills Disease.
I came in the following week to see the Rheumatologist again. She ran a bunch of tests to try and figure out what caused the liver involvement. She also had a resident come in to observe. I remember that she noted that I had Livedo Reticularis in my legs and arms. I didnt know what that mean and I had this coloring to my legs my whole life. I asked what it meant and she said oh nothing. She said it comes and goes so its fine.
At this point, I began to realize that all the doctors and all of the blood tests in the world were not going to help me and that I needed to help myself. I joined an Adult-Onset Stills Disease Support Group on-line. Learned how to find the real medical literature that is archived away on my colleges on-line library database and I started reading.
Later on in the week the Rheumatologist called me and said that I had a positive Anti-Mitochondrial Antibody and I needed to be tested for PBC. She didnt tell me what that stood for I found out for myself the minute she got off of the phone. It stood for Primary Biliary Cirrhosis it was quite a scary thought at the time. I was about 15 years younger than the average women affected with PBC, and my blood tests werent quite matching up either. My doctor started me on plaquenil right away and weaned me off the prednisone in about 6 weeks. My liver has never had an abnormal lab since. I had an ultrasound done which showed a coarsening of the liver. I then was scheduled to have Liver Biospy 4 days before Christmas of 2010. My biopsy showed no disease in my liver so I was told I had the probable start of PBC but no disease right now. The GI doctor said I may or may not get it. So back to square onelol
I started getting the puffy nail fold then as well. By January of 2011 I had my 1st solid diagnosis of Raynauds Disease and within a month I started having these odd changes in and around my nails. By April 2011 I got a second opinion I no longer had any faith in my 1st Rheumatologist. I had a nail fold capillascopy done. It showed that I have sclerodermic changes with drop outs. Usually dropouts mean you have a more progressive form of scleroderma but my Rheumatologist just said that I had Undifferentiated Connective Tissue Disease with Early Onset Lupus and sclerodermic changes. She said that I had Sjogrens and I had a thrush infection on my tongue as well. I no longer was believed to have AOSD however my new Rheumatologist said she couldnt say whether I did or did not have it at the time I was diagnosed.
I have since my 1st rheumatology appointment have had just a few positive tests. 1st being high inflammatory markers 2nd being high ALT/AST plus protein 3rd to positive RF Factors (mildly) 4th one Low C4 complement level 5th 3 rounds of positive Anti-Cardiolipin antibodies plus 2 Anti-B2GP antibodies. None of these tests will help give me any other diagnosis other than Undifferentiated Connective Tissue Disease. I have been sick on and off my whole life. I hope one day Ill really know what it is that is making me sick but so far I just have those tests and my symptoms.
Ive since realized that they really dont know what is wrong with me. However, my particular case would make me think that I will have a disease course that is more severs because of the drop outs on my nail fold test. My doctor will not tell me exactly what is what and she just says I have UCTD. I am seeing her again in October it will then be a whole entire year since I had my worst symptoms. I hope maybe by then some of my blood tests will start to show the true story. But for now all I have to go by are a few scant positive antibody tests and what I can find for information on the internet. This is why I started my blog. As there isnt enough good information out there. There arent enough individual opinions and more people need to keep track of their symptoms with pictures to help document the crazy symptoms that we are dealing with on a daily basis.
In July of 2011 I finally saw a neurologist he told me that I had migraines and that my tremors where from my Connective Tissue Disease basically my muscles are so fatigued they shake from being so tired and sore. Yet another ping in the yes this is an auto-immune issue. As I learn more I will post more right now I am trying to put my life back together. Work and School plus a gazillion doctors appointments.
My blog right now is only 100 views away from 10,000 views. That may not make it the most popular blog by any means but it shows that since Ive only had my blog for a few months that there are so many of us suffering out there. There are so many who dont have any answers at all and others who have been completely misdiagnosed. Im hoping that by making these issues more relevant and easier to find on internet searches more people will have places to go to get the answers that they need in order to get the answers they need for their own health issues.