In this blog post, MSer Krishna is giving her thoughts on a research article posted on Multiple Sclerosis News Today, entitled: 'Mental health can trouble MS patients 5 years before diagnosis'. While the article itself is backed up by scientific research, Krishna is giving her opinions based on personal experience in response to this article. Thank you to Krishna for taking the time to share your experiences with Shift.ms
Multiple sclerosis and me
I was diagnosed with Relapsing Remitting MS in 2015 and I remember the months/years before the diagnosis were extremely stressful and full of anxiety, on matters nothing to do with MS. On reading this article it makes me wonder whether this was a sign?
MS occurs when the myelin sheath surrounding the nerve is damaged and causes a range of issues, such as blurred vision, imbalance, tingling, to name a few. These are usually the early tell-tell signs of MS, but research has also found that pain and trouble sleeping can appear years before the disease is officially recognised. My personal experience was of blurry vision 10 years prior to my formal diagnosis of having MS. I wish it had been recognised earlier that this is the beginning of MS and treatments could have started sooner. Research like this fills me with hope that future generations have a chance for MS to be recognised earlier.
Part of dealing with MS is how quickly a person is diagnosed as having MS – in my case this seemed to take a long time. My symptoms started with blurry vision, which I now know is a very typical symptom and the NHS/opticians/GPs are all trained to recognise this but, in my case, it wasn’t dealt with quickly enough. What was confusing is that the blurriness disappeared almost as quickly as it had appeared which confused me, and the health professionals I was seeing. 10 years later I started to lose my balance, and that was the start of getting further tests until, finally, getting the MS diagnosis. Even though some had started suggesting it several years before the formal diagnoses, I was in complete denial. I couldn’t believe that was what the issue was! I went through all the stages one goes through after a loss. My life, as I’d known it, had ended so I had to grieve. I went through denial, anger and depression before finally arriving at acceptance. I can now take an interest in the research being done on MS and this article opened my eyes to early signs that can help understand the start of the disease.
The research conducted in October 2023 shows that some mental health issues may offer the medical community with clues whether the patient will go on to developing MS later. If these early signs are recognised and acted upon, then it could lead to better patient health in the long term. The sooner MS is diagnosed, the earlier treatments can start which then in turn could potentially lead to a better quality of life.
This study looked at people suffering from MS and went back to find out whether these patients also had bouts of mental health issues (such as depression, schizophrenia, bipolar disorder) a few years prior to the official MS diagnosis.
The research was carried out was across over 31 thousand people from the general population, of which nearly 7 thousand were MS sufferers. The study therefore gave a strong control group based on age, sex and geographical location. It found that mental health issues were twice as common in patients going on to develop MS as those in the general population. There was a further study carried out with a group of nearly 5 thousand people, of which 22% later went on to develop MS. Both studies showed traces of mental health issues at least five years prior to the official MS diagnosis. Research also indicated that use of healthcare resources and appointments (be it for the GP, hospital or prescriptions, etc) was higher in the five years prior to clinical onset of MS.
The research does not suggest that these indicators alone can predict if and when someone is going to fully develop MS. It may, however, provide a valuable tool in the neurologists’ toolkit to help with early diagnosis – and may also help the general population take better care of their mental health and seek help sooner.
My main takeaways
Before reading this article in full, I assumed it was going to say that the research found increased mental health issues in patients already diagnosed with MS. It goes without saying that on receiving the official diagnoses, most people’s lives are heavily impacted with anxiety, worry, and depression. However, this article makes me appreciate that there could be signs much earlier that if they are duly acted upon then many people’s lives would be better served.
By educating the general population of these potential signs, we may be forearmed with early diagnoses which will help us all in the battle with this insidious disease.
I was diagnosed with relapsing remitting MS in 2016. My main symptoms are lack of balance and coordination - and brain fog. Therefore I gave up working and now devote more time to volunteering, my husband and family, and my health. I try and be as physically active as I can be and have recently started swimming and doing some yoga. I was prescribed Tecfidera a while after my diagnosis and take 2 pills - morning and evening. There were significant side effects at the start but they went after a few months. I have recently also started on Fampyra (as recommended by my neurologist) - again 2 pills daily. I have had no side effects since taking this but it's only been 4 months.