Though muscle weakness is common to all, thymidine kinase 2 deficiency (TK2d) can cause different symptoms in different patients. Keeping a symptom log will give your doctor important insights into how this disease is uniquely affecting you or your child.
Why it helps to keep track of how you’re feeling
Many patients and caregivers see medicine as the mere reporting of current symptoms to a doctor and subsequently receiving treatment. However, this mindset needs to change. Patients and families should think of medicine primarily as a partnership between doctors and themselves. This is especially important in long-term diseases of which there is currently no cure.
During an office visit, a patient’s doctor will want to hear how they’ve been doing since their last visit. They will want to hear how muscle weakness is affecting arms and legs, how breathing is and if there have changes in swallowing trouble, drooping eyelids, hearing loss or other symptoms.
The problem with relying purely on your memory is that our memories are notoriously unreliable. If you find it difficult to remember what you ate yesterday, imagine keeping a mental log of how you or your child has been doing over weeks and months.
This is where a symptom log can help.
Read more about TK2d signs and symptoms
What to record in a symptom diary
What can go into a symptom log? In short, anything you consider relevant for your doctor to know.
Primarily, you’ll want to document how muscle weakness has changed over time. You’ll also want to keep a record of swallowing and breathing difficulties, which happen in TK2d because both processes are driven by muscle movement.
Try to describe all symptoms in detail. Keep a record of relevant dates and times, potential triggers and impacts on daily life.
If the traditional paper and pen does not work quite as well for you, you may try using a spreadsheet or phone apps for your symptom log.
How a symptom log can improve care
You are half of the equation in medical care. The more information you’re able to provide, the better able your doctor will be to monitor your disease progression and the efficacy of treatment.
In deciding on treatment strategies, doctors rely on the symptoms that bother patients the most. They want to know whether current treatments are working as well as they should, or whether a change is necessary.
Keeping a symptom log will give doctors important insights into how TK2d is progressing, even allowing them to detect warning signs that the disease may be taking a turn for the worse. In addition, a symptom log will empower your doctor to decide on whether you or your child may be eligible for clinical trials that may be beneficial.
In summary, a symptom log is akin to clinical documentation, only that you are the author. A symptom log can provide doctors with invaluable information on the clinical way forward.
Sign up here to get the latest news, perspectives, and information about TK2d sent directly to your inbox. Registration is free and only takes a minute.