When I first began to develop symptoms of my disease, they were very similar to the symptoms of multiple sclerosis. I was referred to a neurologist who did one brain MRI test. No lesions were present, so he dismissed me and just prescribed an antidepressant. About six months later the symptoms got worse, and I called him back. He ordered further spine and neck MRI testing, which still did not reveal any lesions. He also ordered some blood work, and there were mild positive results on two of the tests. Blood work had also been previously ordered a year prior by my family physician, and there were mild positive results for my ANA [antinuclear antibodies - a sign of potential autoimmune disease]. I had told the doctor in the past that I felt like something was wrong, but she was surprised that the test was positive since other tests had been negative a year prior.
Point #1: Do not dismiss your intuition telling you that something may be wrong just because the medical community dismisses you. You know your body better than they do!
After the mild positive testing from the neurologist, he also dismissed it and said that it was probably due to a recent bout of flu. I told him I wanted to be retested in several weeks to see if the results changed. He was exasperated, but said that was fine. The tests results came back a month later higher than before. So he begrudgingly sent a referral to a rheumatologist after he asked me if that is what I wanted.
Point #2: Stand firm on what you want and follow up on testing, or ask for further testing even if your doctor dismisses it.
I was then referred to a doctor at the premier medical center in our area. My daughter, who has lupus SLE, previously had this doctor. She was not a good doctor, and my daughter had not been happy with her. So I immediately called and asked for another doctor to see me and was assigned a new incoming doctor who was transferring from the Mayo Clinic.
Point #3: If the doctor does not have good ratings online or you have heard negative things about their care, don’t hesitate to ask for another doctor or a second opinion.
Thankfully, the doctor I was assigned was a very good doctor who spent a lot of time with me and listened well and was compassionate and very knowledgeable. The doctor had written many medical scientific papers on my disease and other autoimmune diseases. We sat down together and went over all of my symptoms and she sent me for further blood testing and other physical testing. The testing came back positive. I was then diagnosed with Sjögren's syndrome. I received my diagnosis far earlier than most people do, and I believe it is because I was determined and very involved in getting diagnosed and treated early.
Point #4: Be prepared when you go to a new doctor (or even your current doctor) with a full list of symptoms and concerns and any new medications so you can have a thorough examination. If the doctor tries to leave, tell them you are not finished and you want answers.
After being diagnosed, I found every article and book that was written by experts and respected medical institutions and learned about my disease. At first it caused me anxiety, but now I know what my disease’s symptoms can be, so I do not panic when a new symptom pops up. I know that it is a normal part of my disease and what treatment goes with it.
Point #5: Be proactive in knowing your disease or about your injury, and research what treatments are available and what you can do at home to help. Also, do not wait if a new symptom pops up; call your doctor so it does not get worse. Set up Google Alerts to notify you once weekly to any new findings about your disease or injury and new treatments or drugs that become available.
I began to develop terrible pain in the form of nerve, myalgia, and joint pain. I was so miserable that I actually became despondent. I thought to myself, “I cannot live the rest of my life like this.” I reached out to my rheumatologist and cried to her in the office about my quality of life, and she was thankfully very compassionate. We developed a plan together on how to manage pain. She told me the options and the side effects and let me make the decisions. I was placed on various medications—some worked and some did not. It is a process of trial and error in finding pain relief or relief for symptoms. But do not give up hope, and fight for your quality of life and pain relief.
My life is much better than it was at that point, even though I continue to have chronic pain. I just contacted my doctor recently and asked to switch pain medications to a slightly more potent medication. I was nervous at first because of the crackdown from the government about opioid medications, but I laid out a plan of why I wanted to switch - the drug I had been on for two years had a severe warning not to take it with another drug I am on - and I believed it was causing negative symptoms.
She approved, and the prescription was sent to the pharmacy. I went to pick it up, and they said my insurance would only pay for seven days worth due to the new law. I told them that I would pay cash as my insurance company is not going to dictate to me what medication I can take and how much I should be on for my chronic pain relief. I then wrote to my physician and asked her to write a report detailing why the switch was made and the need for it, and I requested that she send it to my insurance so they could review it and pay for the medication in the future. This had worked with a previous medication, and it worked this time too.
Point #6: Stand firm and be clear-minded. Have your facts in order when asking for other medications and make appeals to your insurance through your physician first and then through yourself if need be. I have won every appeal except one in the past with my various insurance companies.
The reason I detailed my personal story is to show how I learned throughout the process of my disease what was necessary to obtain good quality medical care and quality of life. I assumed at the beginning of my disease that doctors would be invested in me as much as I am in myself, and that is just not the case. There are some wonderful doctors, like my rheumatologist, but there are others who will just dismiss your concerns. The biggest lessons I learned throughout my disease that I wish I had known at the beginning are to stand firm, be knowledgeable, and do the research yourself. Know that the outcome is really determined by your fight for YOURSELF.
This article was written by MyChronicPainTeam member Christina as part of the Member Spotlight series. Christina is living with Sjögren's syndrome and believes it’s important to take charge of your own health and not just depend on doctors.
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