As a child, besides tonsillitis, my afflictions were cold sores (I would get a lot of them) and a strange dark patterned marking on my chest and neck. My mother would try to scrub it off of my with physoderm (anyone remember that). The doctors were not sure what it was, but besides bleaching cream, I didnt receive any treatment. As I got older and loved to tan,the markings began to blend into my skin tone.
In the 90’s as a young adult I had several episodes of swollen cervical lymph nodes, not just in the neck, but up behind my ears and into the back of the skull. The doctor indicated this was caused by a virus and as he also indicated, it would take months for them to go down…and they did. Also, I had a horrid case of psoriasis in the back of my scalp for years. I finally got a good, super strong coritisone cream that got rid of it for good. Besides the pesky lymph nodes (immune related) and the localized psoriasis(immune related), both in my late teens and early 20’s, I had an uneventful medical life. One thing that may be worth mentioning, my mother became a type I diabetic at age 24, when I was 9months old. She had recovered from bought of mono a few years earlier. One thing many dont realize is the auto immune relationship with Type I diabetes. I have no idea how this could correlate with my issues, but certainly seems worth a mention.
2006 I woke up with extreme pain down my arm, herniation in my neck, ended up having surgery with in a few weeks to remove the herniation and fuse a few vertabrae with plates and screws.
2010-2012, in my 40’s I was walking 5K’s often. I was in great shape and enjoyed the challenge and time with my friends. In the spring of 2012 I began having a great deal of pain walking miles when I was having my period. Then the pain started restricting my workouts when it was non-menses times of the month. I was also having incontinence issues and ended up having a hysterectomy with removal of fallopian tube and ovaries (I did have one removed as a result of an ectopic pregnancy in my late teens). Several weeks after my hysterectomy, when I had been released back to full activities, is when my connective tissue ordeal began.
Oct 2012 at a music festival I was wearing my tennis shoes, walking the grounds from stage to stage in an attempt to get back in shape and start to sign up for my 5K’s again. I woke up the next morning with severe pain down the front of my right leg. I automatically thought herniated disc, same as my neck. Went to ER, then to primary care and with in a week was at a pain mgmt doc who ordered an MRI and found no herniations, only a lot of swelling and an arthritic spine, but nothing that would be causing my symptoms.He did an epidural injection that stopped 90% of the nerve pain, but left me with heavy legs, severe limp and inability to walk even 100 yards.
Spring 2013 I was referred to a neurologist who did a thorough work up. Lumbar puncture did not show Multiple Sclerosis, but did indicate past herpes infection. The brain and spine MRI’s showed a few lesions, so I was set to repeat them 6 months later. My ANA, CRP and Sed rate all came back abnormal. In the meantime an EMG came up abnormal and I received a referral to a Rheumatologist.
Summer of 2013 Rheum took me off of cholesterol drugs, cited that they cause muscle spasms, lethargy. Six weeks off of those and then prednisone was prescribed. He had ruled our psoriatic arthritis through X-rays, although the radiologist had diagnosed sacroilitis. My neurologist agreed to send me to another Rheumatologist as I didnt want to arbitrarily begin steroids. During this time my 20 yr old son was diagnosed with ankylosing spondylitis. The Rheum decided that I did not have that either and was pretty much dedicated to dermatomyositis. I have black markings on my elbows and one wrist and a pattern of broken capillaries on my upper back. None were rash like, so I welcomed a new Rheum opinion.
Fall 2013-New rheum ordered the gammet of blood tests, looking at any and all antibodies and sent me for an MRI of my thigh to determine where I should have a muscle biopsy to verify I did indeed have myositis. The MRI came back absolutely normal. The blood work came back with known abnormals, crp, sed rate and ana. Antibodies were all clear except the RNP’s. He said I have MCTD. He said I will, over time develop symptoms and that this is a disease symptom management. He prescribed imuran to suppress my immune system. I declined because my biggest problem is the pain in my leg, which by this time was being managed by epidural injections every few months.
There is so much more, whirlwind of opinions, treatment options, good days, very bad days. I did take a 6 month leave from work just to take care of my body. I learned many things about myself and how I could manage my health and my life.
One more thing others have mentioned is that I also have GERD, very severe sometimes.
I do hope, through this organization, we can gain attention to the researchers and providers to help us put some of these pieces together and find not only better treatments, but some sort of early detection and most desired…a cure.
Thank you to the founders of this site. You are the pioneers and most of us will be here with you every step of the way.