Day 19 – Questions I have for other patients
I suspect this is one of those really important posts where there are actually lots of questions, but I’m too brain-foggy to remember them all. So I’m going to post a few questions, and give myself permission to come back to add more as I think of them.
As a bit of background, I first became ill in 1990, and had my first clear symptoms in 1991. I didn’t get diagnosed until 2002, mostly on the basis of symptoms, inflammation and a Schirmer’s test – ANA and SS-A/SSB test were negative. I have Sjogren’s with wide-ranging systemic symptoms, and fairly early onset at 24 years old. I’m now 46.
Question 1: Did your illness keep getting worse as you got older, or did it stabilize? Did it only stabilize with medications?
I seem to have surges in disease progression. From sinus infections, to difficulty getting enough air while exercising, to chronic fatigue, to pain throughout my joints, to bronchitis/pneumonia, to UV sensitivity, to cutaneous vasculitis, to this constant pain in my right side the past 18 months: can I expect the Sjogren’s to keep getting worse?
Question 2: Can you identify a specific event or illness that triggered the onset of your Sjogren’s? What was it?
In mid-1990, I got a bad case of food poisoning from eating fish in a restaurant. A GP called it giardia, without running any tests. I was really sick with nausea and abdominal pain for 8 months and never recovered. Later, reading the story of Laura Hillenbrand’s struggles with CFS, I was astonished how much her story resonated with mine.
Question 3: Are you unable to take the most common treatments like Plaquenil due to side effects or because they simply don’t work? Are you unable to do anything in terms of medication to help ease the symptoms of your disease?
Plaquenil (and many other drugs including Prednisone) seem to greatly exacerbate my depression, and I find it impossible to get close to a therapeutic dose. I have come to a growing acceptance that there are no pharmaceutical treatments that can help reduce my symptoms, much less cure the disease.
Question 4: Even if you have clear evidence of the disease (including definitive blood tests) do you still have trouble making people understand the severity of your disease? Even when you explain things, do people just expect you to snap out of it and carry on as normal? What do you say to those people? Do you talk about your disease to other people or keep it to yourself?
I had an opportunity last year to give a talk on, what is to me, the importance of creating art to cope with disabilities. Even after explaining the limitations, including the body-shattering fatigue, people’s feedback seemed to imply that I’m just tired and if I rest I’ll be able to push through and do everything as normal.
Question 5: When I was first tested for the SS-A and SS-B antibodies ten years ago they were negative. Is there a chance these tests will have changed since then, given the progression in the disease? Have you been diagnosed without these antibodies?
It’s just nice to get validation that there is more than one way to be diagnosed with Sjogren’s.
Question 6: Is your white blood cell count low or high? Do you have any diagnostic tests that are out of range, but different to what others seem to experience?
I’ve had an elevated white blood cell count since I got ill in 1990. When I read the stories of other people, many report having a low white blood cell count. I’m told that high means inflammation, but I’m confused why it’s different to so many others with similar symptoms. I’ve also always had high ESR and CRP, as well as elevated beta and gamma globulins.
Question 7: Do you have an elevated serum protein IgA? Is that indicative of kidney involvement (e.g. nephritis) or something else? Is this common with Sjogren’s syndrome?
Earlier this year I was given various tests to ‘rule out’ lupus. Most of the tests were negative (such as ANA and DNA ds). My serum protein IgA came back high (nearly double the upper end of the normal range) and the doctor never explained what it meant. They also sent my blood off to be tested for Lyme. I never heard back so I assume it was negative.
Question 8: Have you experienced pain in your kidney region, and did/does it relate to your Sjogren’s? What is the pain like, and do you have any ideas what I should look for, or if there’s any chance of remission from the constant pain?
I’ve had a sharp pain in my right side (well below my ribs) for about a year and a half. It is always there, and I feel like I’ve been kicked or punched in the side. I’ve started showing some increase in blood and proteins in my urine, but the doctors insist that it’s normal, and even appropriate for my age. Given the coinciding pain, I’m worried about some kind of kidney involvement from the Sjogren’s, even though the doctors say there isn’t any. The specialist said the blood/protein leakage would have to be ten times greater before they’d do a kidney biopsy. I’m 46 and I don’t want to have kidney damage because the doctors are always saying it’s normal. I’ve had that kind of negation before and it nearly killed me when I had internal hemorrhaging with ovarian cysts. I’ve had a long history of UTIs with the Sjogren’s, and what I thought were kidney infections with similar pain in the past that went away with treatment with alternative herbals (yellow dock). Yellow dock doesn’t work anymore on this type of pain.
Question 9: Do you still have some saliva flow? DO you have areas of your mouth that are moist and others that are dry? When you have to have dental work, do you find your mouth gets flooded with saliva?
I’ve always had strong ‘muscles’ in my jaw, but I wonder if the inflammation is actually the parotid gland swelling. I seem to produce saliva under my tongue, but not along the sides of my tongue. The last part of my question is prompted by a visit to the dentist yesterday. The strain on my jaw as well as having all those tools in my mouth seems to make me salivate. I don’t think they believe I have Sjogren’s because of all that saliva when I visit!
Question 10: Have you made any dietary changes that have greatly improved your Sjogren’s symptoms? What changes have you had success with, particularly with extreme fatigue when food preparation is difficult?
I tried a gluten-free diet once for several months and found some improvement in my symptoms, but found it was quite difficult to follow. Pre-packaged food with lots of preservatives really increase the Sjogren’s symptoms. My greatest barrier to improving nutrition is, as suggested above, finding the energy to prepare my meals from scratch.
Well, I’ll probably think up more questions when I’m not so tired, but these are the ones I can think of for now. I appreciate any insight other people with Sjogren’s may have on these and related questions.