All of Us

All of Us

Sunday, July 13, 2008

What Next? (Prayers please!)

A little over a month ago I began having what I thought were carpal tunnel symptoms, mild numbness and tingling in both hands. I'd had this during pregnancy, but it went away. Initially, I ignored it, but it rapidly progressed to a lot of pain, particularly in my wrists. I saw a doctor who prescribed a splint and physical therapy on June 19. After a few days, my right hand, which was much worse, began to swell. I thought it was being caused by the splint. The numbness and tingling at night had progressed to severe burning and pain, waking me many, many times at night. Meanwhile, I was feeling very fatigued, but the interrupted sleep combined with the last week of school, 2 birthdays, and Daryl being out of town for 3 weeks in a row, led me to believe that it was being caused by those external circumstances.

The next week I saw my osteopathic physician for manipulation to help with the carpal tunnel. I mentioned my fatigue, along with a rash that I have had on my chest since April, that was small but had suddenly covered my entire chest, and the deep, dark circles that had suddenly appeared under my eyes. He ran a battery of blood tests. Several days later he called to tell me that everything was normal. I am hypothyroid and we both suspected that perhaps my levels had shifted and I was now undermedicated, but that was not the case. I left that morning, June 27, for a vacation in Telluride, CO with my family. I planned to see a neurologist upon my return to find out what I could do about the intense nerve pain I was having, which was still keeping me up at night.

A few days into my trip I got another call from my physician to tell me that he had just received the results of another blood test that took a little longer than the others, for an autoimmune disorder, and it was really high. The test was for antinuclear antibodies (ANA) and it was 2560, speckled pattern. Normal is under 40. I also had mildly elevated CRP and Rheumatoid factor numbers. At this point my right hand was so swollen I couldn't close it at all and it was also very weak. My left hand was also swollen but not as badly. The circles under my eyes were much deeper, and there was now some swelling under my eyes. I had a rough scaly rash on my elbows and numerous bumps, lesions, and calcium deposits on my hands. While the rest of my family enjoyed the great outdoors, mountain biking, hiking and white water rafting, I mainly rested and kept track of the new symptoms that appeared daily. We changed our plane tickets and came home a day early.

I saw my physician the next day, July 9. By this point my eyes were quite swollen and the normal creases that go from the inner eye down the cheek were purple and very deep. My eyelids and the area under my brows had turned a light brown shade. This is known as a heliotrope rash. My physician consulted with a rheumatologist, who told him what additional tests to run on me and suggested he start me on prednisone immediately, and promised to try and get me in his schedule within two weeks.

I dutifully donated my 8 vials of blood.

The prednisone has helped, reducing my symptoms but not eliminating them. It was frightening how quickly this all happened. Hopefully once the new lab results are in (next week) we will have a better idea what the illness is and how to control it. Possible diagnoses are things like rheumatoid arthritis, lupus, scleroderma, dermatomyositis, etc. The prednisone is just a short term solution to stop it in it's tracks. The rheumatologist is supposed be really good, really nice, and is a the father of a large family. I hope he lives up to my expectations!

Food and sunlight and hormonal changes are all known triggers for autoimmune flareups. My only theory at this point is that when we went to Florida in early April and I spent a week baking on the beach, it triggered this. That was when the first symptom, the chest rash, appeared. I have previously had sun poisoning, an allergic reaction to the sun, in tropical climates and that is what I thought it was except that it didn't go away and my skin gradually grew leathery in that spot. After 7 years of living in cloudy Michigan, perhaps that giant blast of sunshine was more than my body, which has previously shown sun sensitivity, could handle.

So if you pray, please pray that this is quickly diagnosed and it is not severe, and manageable. I am thankful that it occurred during the summer when my responsibilities are less and my older children can help more. I have had trouble doing things like changing diapers and snapping baby clothes, opening jars and bottles, clipping my fingernails, cutting food with a knife, etc.

And I'd be interested in hearing the story of anyone who has battled a similar problem.


Lawfrog said...

I know this is scary, but it sounds like you're receiving great treatment. I will pray for you.

Jody said...

(((((Hugs))))) Paula!

And prayers too. Let us know how the test comes out.

Jean said...

I don't know you, but I was diagnosed with scleroderma last fall. Since then I have researched and found that the treatment that improves the condition and does no harm is low level anti-biotic minocine. Go to and read the testimonies from people who have used this treatment. Join rheumatics group at Yahoo and the members there will give you answers to all sorts of questions you will have as you progress. Yes prayers are the starting point and will provide the answer. That is where I started and found my answers. Also research the Marshall Protocol for a total remission. Some people will appear on both sites as people go from the antibiotic to the more structured Marshall Protocol.
My prayers are with you. Jean

Janene said...

I have a google alert for dermatomyositis which is how I came to your blog. Rheumatological diseases are difficult to diagnose so hopefully you will be able to see the rheumatologists sooon. I was diagnosed with dermatomyositis last summer and some of your symptoms sound very much like my own. What brought me to the doctor was my hands. They were swollen and hurt so badly that I was unable to grip items. All my joints were swollen and inflamed but my hands were definitely the worst. I also had a persistent cough due to some minor lung inflammation. Because of my joint pain, I didn't notice that my muscles were weakening. From what I have read, a lot of people unconsciously make adjustments to accommodate the increasing muscle weakness. I also was very tired. I am very fair skinned so I am usually careful with the sun but ended up with a bad sunburn with a rash. I really had just minor skin manifestations.
From the time I first went to my doctor to my diagnosis was a month and a week. I felt they did a million blood tests for everything imaginable. Things moved quickly when I was sent to a rheumatologist who tested my CPK level which was very, very high and indicated something was going on with my muscles. I went to a neurologist who gave me an EMG. Those results pointed to polymyositis or dermatomyositis. The final step in my diagnosis was a muscle biopsy. There are those with DM who just have the skin problems. I was tested for anti-Jo 1 antibodies and was strongly positive. This put me in a small group who also have joint and lung problems.
I would be happy to share more about my treatment but thought the diagnosis part of my story would be more of interest. I will tell you that I am doing much, much better. I think being persistent and thorough so that you get the right diagnosis and thus the right treatment is critical. Plus a positive attitude and strong support system always helps! Feel free to contact me.

Lori said...

How are you feeling Paula? Thinking of you.

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SE Michigan, United States
Mother to 10 fabulous kids, ages 4 to 21 years! Married for 26 years to my best friend.


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