My Autoimmune Journey

I am in my 50’s and am from the Houston, Texas area.

I learned of my first autoimmune disorder when my daughter was diagnosed with Hyperadrenergic POTS. It is a hereditary form of Postural Orthostatic Tachycardia Syndrome and is thought to be an Autoimmune disorder. Research led to the understanding of the reason for many symptoms that I had for years.

My second autoimmune disorder was diagnosed when an MRI of my Cervical Spine showed a suspicious lesion on my thyroid. Biopsy showed ‘possible cancerous characteristics’ so 1/2 of my thyroid was removed. Fortunately pathology was negative for cancer, but it did show Hashimoto’s. I am now Hypothyroid so am on Synthroid for it.

I am now in the process of being checked for other autoimmune disorders by a Rheumatologist. I am grateful that he is very thorough and has ordered many blood tests. My visit to him started when a week ago I noticed my eye felt bruised. I looked in the mirror and it was bloodshot, but more concerning was the appearance of what looked like a ‘wrinkled’ soft contact lens in the same area (outer white of eye). That was shocking because it was not a contact lens. My eye was also dry but I experience dry eye and use Refresh Tears multiple times a day. I went to an Opthalmologist the next day and was told that I had scleritis. She explained that there was fluid between the outer most surface of the eye and that underneath which gave that appearance. I was given steroid eye drops to use for 2 weeks. The bruised feeling went away quickly and I am still using the drops. The Opthalmologist said she couldn’t be sure what caused it and that since there was no irritation of the eye from trauma, it could be any number of causes.

On-line research showed that scleritis is sometimes related to Rheumatoid Arthritis. A couple years ago my Chiropractor asked me to have my blood checked for Rheumatoid, but at that time it was negative.

I saw my Internal Medicine physician the next day and told her about the scleritis. When she asked what the Opthalmologist thought the cause was, I told her she wasn’t sure, but that it wasn’t from an irritation or injury. Her response as we talked about it was ‘be sure to clip your hair out of your eyes when you are working at your computer’. Really?!! This is your ‘take’ on that? Wow. i told her that my eyes are dry every day and that I use Refresh Tears more than twice per day. When I asked about Sjogren’s her response was ‘we only treat the symptoms of Sjogren’s anyway’. I also mentioned to her that I had been seen by one of her colleagues a few months ago because of my fatigue, low grade fevers and at that time the joints of both of my hands had been hurting. They had run some basic bloodwork including Mono test which were normal. I told her that I am still having fatigue and low grade fevers. She responded that ‘if I am waking up drenched in sweat that’s when we need to worry about fevers’. In other words she was not the least bit concerned that I had been having low grade fevers for months. I thought that was odd since Rheumatoid Arthritis does list low grade fevers as one of the classic symptoms.

I was having a very painful flare of my neck and bilateral shoulder pain when I saw her. She prescribed me Meloxicam and Flexeril (muscle relaxer) which did help and has helped in the past as well. I had been seen by another NP in their group a couple months earlier with a flare of bilateral shoulder pain, for which I was prescribed a steroid dose pack which did take care of it. I inquired about what might be causing these flare ups. Her response was ‘You are always busy.’ I told her that I hadn’t been doing anything physical to cause the issue. When pressed she did say that it wouldn’t be a bad idea to see a Rheumatologist. When I inquired if she thought it might be Rheumatoid, she said ‘no I’m thinking Ankylosing Spondylitis. Rheumatoid is usually uveitis and other eye problems’. I looked on-line again later and saw that I had not read it incorrectly. Scleritis is associated with Rheumatoid Arthritis.

I contacted a friend who recommended the Rheumatologist and I was able to get in a couple days later which was great. He was very thorough and ordered more than 20 blood tests of different types. He also gave me orders for x-rays of my spine and sacroiliac joints. He did let me know that tests aren’t always definitive. I was still relieved to at least having the tests in the works to a possible answer. When I told him that my internist had thought Ankylosing Spondylitis was a possibility and his response was that Rheumatoid was more likely related to the scleritis. My other doctor had mixed up the two.

Honestly in years past I preferred seeing the PA, who is unfortunately no longer working there. I would have followed her elsewhere but she is instead teaching nursing. I would be looking for another physician now but I will be moving far away very soon so there is no point.

My friend who referred me to the Rheumatologist also told me that my Internist was wrong, that there is a medication being prescribed for Sjogren’s! I found it interesting to see on Autoimmune Facebook page from Ashlee, that Sjogren’s also causes GERD as well as other stomach issues and dry skin, all of which I have had for years. I knew about the dry eye but was not aware of the other symptoms. I was told when in my 20’s that I had Irritable Bowel.

I am looking forward to seeing my Rheumatologist again after blood tests and x-ray results are back. Hopefully there will be some definitive findings soon.