Dana Morningstar

I have Psoriatic Arthritis, Sjogren’s, fibromyalgia, CFS, Hypermobility EDS, Avascular necrosis, Osteopenia, Osteoarthritis, Pseudo tumor Cerebri, Endometriosis, Hypertension, and now with my SI joints, cervical and lumbar spine involvement, I likely also have Ankylosing Spondylitis. Because I was already diagnosed with a spondyloarthropathy, Psoriatic Arthritis, my temporary diagnosis is being referred to as Psoriatic Spondylitis while we wait for more symptoms to occur. I am also being watched for Lupus. I have symptoms but none of the tests are positive.

I was always a sickly child. I didn’t walk until I was over a year old. I couldn’t flush the toilet or turn the door knob until I was 5 years old. I was a dancer starting at a very young age, 2, because my mom thought it would help build up my muscles and strength. I always had aches and pains since I was a young child, but doctors always thought it was because I danced. Also, the doctors said that my immune system was not fully developed, so I would pick up everything. So I had to be extra careful around others. I have since come to find out that two of the diseases I have been diagnosed with are autoimmune arthritis diseases (PsA and SS), and two that I am being watched for are also autoimmune arthritis diseases (Lupus and AS).  That would explain my immune system.  PsA and AS are both Spondyloarthropathies which means that they both have spinal involvement which is why the doctors are having a hard time distinguishing between the two.  I have Psoriasis, but you can get Psoriasis with AS as well, so you can see the confusion.  Also, my Avascular Necrosis (which is in my 6 large joints: hips, knees and shoulders) is likely caused by the connective tissue involvement from the autoimmune arthritis diseases.  Because of the AVN, I have had my right shoulder and both hips replaced.

I was always sick. In second grade, I missed 32 days of school. I would get strep throat every single time I returned to school. Then I ended up with chicken pox that same school year so bad that it was in the corners of my eyes, my ears, the bottoms of my feet, etc. My body was covered! In High School, I had Mono from the Epstein Barr Virus, and was very sick from it. I had no energy at all. I had heard about Mono before, but never knew how drained you really felt. It took me 6 months to feel human again. Then in College, I had Mono again. It was even worse. I slept through an entire semester. I was so sick. I didn’t eat. I lost weight. It was awful. I found out that I would continue to get Mono 7 times at least, each time being worse and worse. One year I had Mono and Shingles at the same time. I felt like a truck hit me and put it in reverse to back up over me a second time. Then, that same year, I got Shingles again. That is when my joints began to really start hurting me again. I thought it was still from the Mono, but it just wouldn’t go away. I was told that I had Chronic Fatigue Syndrome, but the doctor said that most medical people don’t believe in it, so I would have a hard time getting treated. I was also diagnosed with hypertension in 1997. I had a hypertensive storm. It was severely high–280/120. They told me that it was primary hypertension with no underlying cause.  I got married in 2000, and my hubby knew all about my illnesses, but he married me anyway. I began having pain in all my joints. The doctors said there was nothing wrong with me, but no one x-rayed my knees or hips or did any tests on my legs at all. Instead, they did a brain scan to search for lesions to rule out MS. When that was negative, they no longer searched for anything physical. They assumed it was psychological. I was put on antidepressants for depression. I was told depression could cause pain. I had horrible reactions to the antidepressants. We moved to KY in 2002. I didn’t have any doctors yet, so I ran out of meds. I went to see a psychiatrist who said that I wasn’t depressed and shouldn’t be on antidepressants. Then I couldn’t walk up our back steps. The PCP sent me to an orthopedic surgeon who did an x-ray. He found nothing. But he told me that he had an idea what it was. He sent me for an MRI. He told me then that my diagnosis was osteonecrosis or avascular necrosis of both hips. Two months later it showed up on an x-ray. It was stage 3. One month later, I had core decompression on both hips. The right hip took; the left did not. I was in a wheelchair the following year and remained there for 6 months. I had a total hip replacement of the left hip in Dec. 2003. I was 29 years old. I went from the wheelchair, to a walker, to a cane. I used the cane for quite a while until I switched arms and used the cane for the other hip.

I didn’t understand why all my joints and muscles hurt so much though if I had AVN/ON in only my hips. I soon found out that I had AVN/ON in my knees and shoulders as well, and the shoulders were as bad as the hips. Then a rheumatologist said that I had to have some type of connective tissue disease if I had all of these joints involved in AVN/ON. Already AVN/ON is so rare to begin with, but to have 6 joints with idiopathic involvement almost never occurs. I was diagnosed with sero-negative rheumatoid arthritis in 2003. Then it was changed to sero-negative spondyloarthropathy. Then I was also diagnosed with Sjogren’s that same year when I found out I had no tear production, and my cornea’s had sores on them. I also had blocked salivary glands because no saliva was being produced. I was put on anti-inflammatories, Oxycontin, artificial tears, Restasis, pilocarpine, and an anti-malaria medication (Plaquenil) for sero-negative spondyloarthropathy.  We moved to RI in 2006, when I was finally diagnosed with fibromyalgia, after having excruciating muscle pain for all those years with no relief. He started me on an antidepressant, hoping for no crazy side-effect like before, and also a muscle relaxer. It was a good start. RI was a great place for me to live for a short year. I was finally diagnosed with psoriatic arthritis when I broke out w/ psoriasis from head to toe, and I also had a sausage digit indicative of psoriatic arthritis. I found out later that I had psoriasis when I was a child, so that would have helped with an earlier diagnosis. I also had my medication changed from Plaquenil to methotrexate (a chemotherapy medication). My fibromyalgia medication remained the same for the time being.  We moved to GA in 2007. My rheumy there decided that he didn’t care what my medical records said. He took me off all my medications to see for himself if my joints would swell. I couldn’t even believe this was a real Atlanta doctor. He was even voted Atlanta’s Best Docs. In the meantime, I tried to get into another local rheumy that I heard was a great doctor. While I waited those 5 months however, I could hardly move. I also was waiting to get into a pain doctor for the AVN/ON and fibromyalgia treatment, which also took several months. I had pain where I didn’t even know you could have pain. I had sensations in my body that I never felt before. I literally prayed to God that I would just die!  One week before my appointment with my new rheumy, my elbow swelled up to the size of a softball. I went to the ER just so someone had record of it for my new rheumy. They wanted to know at the hospital if I wanted something for the pain or any treatment, and all I wanted was an x-ray or MRI and written record of proof that my elbow was indeed swollen from fluid on the joint, that I indeed had synovitis.  I had already gotten in to see my pain doctor by then and was given Oxycontin as well as a medication that works on the central nervous system for pain for the fibromyalgia called Zonegran. {I actually had been on it before in 2002, when my optic nerve was swollen. I had pseudo tumor cerebri. No one knew why, but I had severe headaches with nausea and other visual disturbances daily. I had also lost some of my sight. While on Zonegran, it decreased the pressure behind my eye, causing the pain to go away and my vision returned to normal. I was taken off the medication after being on it back then until 2003 because I was told with pseudo tumor cerebri, after 6 months of treatment, if it goes away, it won’t come back. Well, I noticed that I wasn’t really watching TV anymore, but just listening, then when driving, I could no longer see the street signs, and then I couldn’t tell which way the cars were facing on one-way streets to know which ones to turn down. Then I could see nothing, and the headaches returned. The pseudo tumor cerebri came back with a vengeance. No one understood why, but I was put on a different medication than Zonegran in 2004. It was called Topamax. It is used a lot with migraines, but it also relieves the pressure. I was just on an extremely high dose, and I lost a whole lot of weight with it.} So when I went to see the pain doctor and he put me on Zonegran for the fibromyalgia, I already knew how I would do on it because I had been on it before.  Then I went back to that pain clinic and my pain doctor had left the practice rather suddenly so I was placed with another doctor in the group who wasn’t with my insurance. Of course they didn’t check on that. I ended up paying a ton of money out of pocket for an out of network provider. Then he said I probably needed to up my Oxycontin after so many years of being on the same dose of 10 mg long acting twice a day. He said that your body gets used to it. I agreed although I wasn’t quite sure I agreed to his decision. He wrote a script for oxycodone 15mg twice daily. The problem was that this script was not a generic for the long acting; it was a short-acting medication. The doctor didn’t even know what the heck he was prescribing me. I called the pharmacist because I thought it was odd that it wasn’t Oxycontin, and that it didn’t say XR or SR or something like that after it. The pharmacist said it was indeed short-acting. So I contacted the nurse with my concern. He really thought it was a new dose for Oxycontin long-acting. He apologized and gave me my original script again. He said he could write me a new script for 20 mg twice a day for the long acting to up the dose. I said “no.” firmly because I didn’t think I wanted to go up in dose anyway. That same doctor also said he was going to give me an injection in my shoulder. I waited with my arm out of my sleeve, and he never returned to the patient room. The nurse came in with my fee slip and my script and told me to come back in a month. He just totally forgot. So I asked to please give me a competent doctor that was at least in my network. Finally they gave me the head doctor for the group as my new doctor. One day all patients on narcotics were ordered to take a urine test to make sure they are actually taking the drugs prescribed for them. No problem. I voided in a cup, set it on the counter, and left…A month later, I came back. The doctor came in and said that my test came back positive for cocaine and negative for Oxycontin. I was shocked. Obviously, either one of the nursing staff switched it on purpose or accidentally or it happened at the lab, but the doctor didn’t believe my story because he had the results from the lab. I told him I was going to get a lawyer and everything because they didn’t even test it correctly. Drug testing needs to be sealed in front of the patient, etc. That was not done. I have no idea what they sent as my urine. It was finally straightened out when I came in a week later and tested again with no sign of cocaine and normal levels of Oxycontin. It was obvious that the other urine wasn’t mine. They have changed the way they test for drugs now, etc. The problem is that the first test is already part of my record. He had to type a letter and put it in my chart stating his belief that it wasn’t my urine. It was a horrible ordeal.

My new rheumy meanwhile started me back on all my anti-inflammatories, methotrexate, and Remicade (an IV Biologic infusion for autoimmune arthritis), as well as Flexeril and Skelaxin (muscle relaxers for fibromyalgia). He also gave me pilocarpine for saliva, the supplements that would be depleted by methotrexate, and pain patches (non-narcotic). He tested my vitamin b-12 and D levels. They were next to nothing, so he put me on extremely high doses of those. He did a bone density test as well, which still showed osteopenia–not quite osteoporosis. He wanted to put me on calcium, but my bones do not absorb calcium supplements. {Back in 2004, a metabolic bone doctor tested me out for all kinds of things. He said that I had a lot of calcium deposits outside of the bone; I also had kidney stones that were calcium oxalate. He told me that I should cut calcium out of my diet. Because I had such a low vitamin D, he told me to take vitamin D supplements instead.} Obviously, the amount of vitamin D that I had been taking was not enough. Then, when I increased my dose to 2000 IU per day, my calcium in my blood decreased. It had been incredibly high. Also, I no longer have the calcium deposits and haven’t had any kidney stones either.  So what I didn’t mention was that I also had severe problems with plantar fasciitis, Achilles tendonitis, tenosynovitis in my wrists, tendonitis in my elbows, bursitis in my shoulders, problems with my ACL’s, my SI joints, and my neck, and was told that my pelvis looked like it was crushed in an auto accident.

I’ve been skin tested 4 times for allergies, and all my allergists have said the same thing. They have never seen reactions like mine. I am allergic to everything and with a huge reaction. I carry 2 epi-pens and albuterol. I also have asthma. I have a severe shellfish allergy and latex allergy–they both cause anaphylaxis. I have many food allergies. I react to changes in temperatures with hives. The sun gives me hives. I have to have tinted windows on my car. I have so many sensitivities. I also have endometriosis. I had 2 laparoscopies. I was in menopause for 6 years. I don’t even know if I’m having periods or not again, for real. I was put on the Nuva Ring in 2002, and that is when I began having a cycle again. Now I keep the ring in to just have 4 periods a year, but I only bleed for 1 day. So again, I’m not certain that if I stopped the ring I would still have a period. I had a fertility doctor test my levels in 2002, and she said I was at the level of a pre-pubescent 5 year old. I’m not even sure what that means. I had periods for years up to age 21. Then they stopped.        

My right shoulder collapsed the day before Halloween Oct. 2009. I had to wait until March 29th 2010 to finally have it replaced. I worked very hard to rehab it. I’m doing very well with it now. Right around the same time as my shoulder collapsed, I was also having difficulty with my fingers and had to get refitted for my finger splints. I have hypermobility EDS in my fingers with hardly any connective tissue even left. I also began to have severe pain, lack of mobility and stiffness in my neck, lower spine and SI joints. I was diagnosed with severe arthritis in my cervical spine, a bulging disk in my lumbar spine and a small amount of arthritis in my SI joints. I was scheduled to have epidural injections in my neck and lower back. I cancelled my appointment. I decided that I did not want to risk injecting steroids into my spine. I already have AVN in 6 joints and did not want to risk long term effects of steroids to my spine. I can’t even imagine having AVN in my spine. It would be on top of possible AS, or what is being called Psoriatic Spondylitis.

I just had my right hip replaced May 10th, 2012. It collapsed almost completely around the holidays. I didn’t give up at all though. I continued to belly dance. I even danced in the 4th Anniversary Show in two different dances. I am so glad I did. It kept my spirits high. It kept my muscles strong, and it protected the area around the joint until the hip was replaced four days after our belly dance show.

My husband and I adopted our first son 9 months after my shoulder was replaced as well in Dec. 2010. It has been a long road for me, and it will continue to be. I anticipate that I will continue to need more surgeries and that new procedures, treatments, medications, and possibly even diagnoses are in my future. The reason I wanted to share this with you is that we all have such incredible medical histories. Many times we are told that nothing is connected, and that we have all these different diagnoses. How can one person who never drank or smoke or did drugs have so many things wrong with them? I was premature. I was born 2 months early, weighing 4 lbs 11 oz. They found nothing wrong with me at birth. I believe that I always had something wrong with my immune system that affected immune response to allergens, and has attacked itself in many ways causing many autoimmune arthritis diseases. I think that they will figure out that a lot more of my diseases will end up being autoimmune or auto-immune related.

Georgia United States of America

One Response to “Dana Morningstar”

  1. Dear Dana,
    Thank you so much for sharing your story with us. I wanted the world to know about your amazing strength and courage. I am so blessed to call you my friend, if it wasn’t for your gentle encourament, I am not sure I would have had the courage to follow my heart and there would be no Faces of AS. Thank you for being there for me when I needed you. You are an amazingly beautiful spirit and out shine the stars in the universe.
    I love you my friend
    Sincerely Cookie

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