A diagnosis that is hard to swallow…

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“If I gave you a cracker right now, could you chew and swallow it without water?”

Struck by the oddness of the question the Rheumatologist asked, I nevertheless thought about it only a fraction of a second and answered a sure “no”.

Why would he, a Rheumatologist, be asking such a question when I had been sent to him because of my ongoing complaints of sore joints, aching muscles, relentless fatigue and some vague irregularities in common blood test results?

I had seen this specialist once before. He had conducted a brief physical exam at the time, with special attention to my joints and muscles. He assured me I was completely healthy and he had no concerns. However, he sent me off to the lab that day after my appointment because he wanted a few specialized blood tests done. About ten days later he called asking me to come in to see him again for a more thorough examination, as there were some “indicators” in my lab work but he did not elaborate on what they might be.

This visit he started by looking in my mouth. I simply thought he was going to do a complete exam head to toe. After asking me about my ability to swallow a cracker he told me that my mouth was extremely dry, with barely any saliva in it all. I had never thought about it, but as he told me this, I knew he was correct.

This week someone asked me if dry mouth was the first symptom of Sjogren’s I experienced. I replied initially I thought it was not but rather it was the unrelenting fatigue alongside muscle and joint soreness that brought me to the doctor over and over again starting in my thirties. Looking back however, I suspect I may have had Sjogren’s as a teen or possibly as a child.

I remember being quite young and putting butter on my crackers when I ate them. As a teen my Mom looked at my toast and asked sarcastically, “You think you have enough butter on that?” I now realize I needed the fat on my crackers and toast so I could swallow them easily. My Mom had also wondered how I could wander around the house brushing my teeth and not be drooling frothy toothpaste all over. It is all clear now; my mouth was simply very dry for a very long time.

Further evidence of the dry mouth problem was that I had numerous cavities as a child / teen and was subjected to extensive dental work for fillings and crowns. As a young adult, my dentist said “You must have been a real grunge mouth when you were younger?” Thinking back, I realize as a youngster I was probably not as meticulous as I am now about my oral hygiene. I certainly know now how many foods adhere to my teeth; even something as simple as a single bite of a cracker or bread can cling to my teeth for hours since I have so little saliva.

Lack of saliva can increase risk of choking as well. At times I have had a miniscule piece of romaine lettuce or carrot get stuck on the lining of the back of my mouth or throat, strongly adhered, difficult to get back up or go down. Even with a drink sometimes it will cling, requiring me to eat a bite of something else in hope of it catching that fragment along with it to swallow.

The Rheumatologist had explained there were tests which could be done to confirm the Sjogren’s dry mouth diagnosis (lip biopsy, unstimulated salivary flow rate, etc.) but he said in my case they were absolutely unnecessary; a visual check combined with the blood tests, and other physical complaints was all he needed to be sure.

He explained I tested positive for ANA as well as the Sjogren’s specific antibodies SS-A, and SS-B in my blood therefore I indeed had Sjogren’s Syndrome. I had not an imaginary, psychosomatic illness, but a real one that had shown up in my blood explaining the symptoms I had been complaining about and reporting to doctors for years.

In that moment I was relieved, as well as excited to have a diagnosis at last. Little did I know then; in the coming years I would discover the diagnosis would be difficult to swallow in more ways than one.

*Note: Sjogren’s is not the only reason people experience dry mouth. Hundreds of medications (both prescription and over the counter drugs), cancer therapy, tobacco use, and nerve damage are a few of the other main causes of dry mouth. It should be noted that dry mouth is only one of many possible symptoms of Sjogren’s. For more info visit: http://www.sjogrens.org or http://www.sjogrenscanada.org

8 thoughts on “A diagnosis that is hard to swallow…

    • Thanks Shannon. I have always found it helpful to read about the experiences others have with Sjogren’s or other illnesses, rather than just what the handbooks and textbooks say. Hopefully my blog postings will benefit other Sjogrens patients, as well as provide for greater awareness and understanding in the general population.

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  1. Hi Suzanne, this is so interesting and at the same time troubling. The things we all take for granted like simple saliva. Is there ‘help’ for this? Or do you just learn to cope with it? Does it vary for you? Are there good and bad days? As it happens, I’ve overused a decongestant the last couple of days and have a little ‘taste’ (pardon the pun) for what this might be like. The back of my mouth and throat is dry and swallowing food is a bit like you describe it. My chewing has been a bit ‘conscious’.
    So good you are sharing these insights xx

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    • Hi Lisa,
      Yes it is true, we take so many things for granted, such as saliva and tears until we don’t have them or enough of them. Thanks so much for your interest in my blog and for your questions – I just turned them into another blog posting. 🙂 I’m sorry to hear you’ve had to take a decongestant, hope you feel better soon! I wish you didn’t have that dry mouth feeling, but glad to hear you are aware of the need to eat / chew a bit more consciously right now. Take good care! Hope you feel like your old self soon.

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