Making Sense of it All

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I recently received an excellent email from a reader. She was exhausted, achy, dry, and miserable, and when thinking about scheduling an appointment to get some answers - felt intimidated. 

Her experiences reminded me a great deal of how I felt as I was looking for answers regarding my health problems. She - and I - both had to work through those feelings of self-doubt. Am I crazy? Is this all just in my head? Am I just lazy? If I lost ten or twenty pounds would all my problems go away? 

Of course the answer to these questions is NO. 

I can say that with such certainty because I have had six years to look back at my diagnosis and treatment and lifestyle changes. My reader is just beginning her journey, and dear reader - you and everyone else who is in the process of diagnosis has my empathy and support. 

I responded to her letter in this way (her specific symptoms and name omitted, of course):

It’s so frustrating to feel unwell, to know that your body is just not what it used to be, and yet not have a diagnosis to give it all a name. I’m so sorry that you are not feeling well.

You had asked what my diagnosis for Sjogren’s encompassed. I had visited my family doctor for various non-specific complaints, (fatigue being the primary symptom). She was supportive and did the very basic lab tests etc to rule out common problems. All came back normal, with the exception of my labs relating to my thyroid function. She placed me on a thyroid medication and I was optimistic that my problems were solved. The synthroid did help – but not as much as I had hoped. And my fatigue and dry eyes and mouth continued to progress over the next two years. I also continued to lose my sense of smell over time. So she sent my to an ears nose and throat specialist, who examined me and said “Yup. Diminished sense of smell.” I asked him why this might have happened and he just commented that he didn’t know. All the physiology in the area was normal. Gee. How helpful.

Finally, my parotid salivary glands began to swell. It happened gradually, and I didn’t actually even notice it myself but a co-worker did. I was working at the time with elderly patients, who are very susceptible to infections, so it was important that I got a definitive diagnosis regarding my parotids. My fatigue became significantly worse, had my first experiences with brain fog, the dryness in my eyes became worse, and I had body-wide aching. I was referred to a rheumatologist since at that point my doctor suspected some kind of autoimmune disease.

My rheumy ran an incredible amount of labwork, did a chest x-ray, a thorough physical exam and medical records review. She diagnosed my with Sjogren’s based on a positive anti-SSA autoantibody, a positive ANA blood test, an elevated sed rate and C-reactive protein blood test, my dry eyes and enlarged parotid glands. I know that she ran a zillion other blood tests to rule out various other autoimmune diseases, all which came back normal.

I agree with your comment that sometimes doctors’ eyes just glaze over when presented with a laundry list of symptoms and problems that is a mile long. It does seem as though they grab just a few things on the list, discuss those and then make a break for the exam room door.

Do you have a good relationship with your family doctor? It really helps to work through this type of experience with someone who has some knowledge of your medical history. It’s hard to start from scratch on each appointment.

I would offer a few suggestions for your next appointment:

• sit down and try to triage your symptoms. What is the most distressing for you? Try to focus on the three or four most troublesome symptoms.
• Before your appointment, write down those symptoms and some specifics about when those symptoms seemed to appear and what you have tried to do to resolve them.
• Several of your symptoms that you have shared with me can be related to Sjogren’s. However, several other conditions can cause these same symptoms, so it’s important for your doctor to rule out other causes as well.
• Be patient, and I know this is hard. Typically, it takes several appointments to discover the cause of your symptoms, and even after some diagnosis, it may take several more before a long-term plan of care is formed.
  

If you feel comfortable doing so, you may want to ask your doctor if they have had experience treating patients with some type of autoimmune disease. My family doctor knew very little about Sjogren’s, so she has learned a great deal about it from me and my rheumatologist.

I sincerely hope that you find that you don’t have Sjogren’s Syndrome! But if you do, please know that there are lots of Sjoggies out there, myself included, that can offer support and a sympathetic shoulder to lean on.

Best regards,
Julia