On Tuesday, Merely Me asked a few questions: Do you feel that your personality has changed due to having Multiple Sclerosis…? Have friends or family told you that you seem different in temperament since your diagnosis?
My first response was similar to her own sentiments in that I would like to think I am the same as before MS. So I put the question to someone close to me, my mother, who said, "I believe that you are more outgoing than before." I pondered - more outgoing… I suppose, but doesn’t age and experience have anything to do with that?
One of Merely Me’s quoted resources was written by Patricia Daily, L.C.S.W. who is the Director of Counseling and Support Services at The Rocky Mountain MS Center (RMMS). The article "MS and Personality" first appeared in RMMS Center’s Quarterly Newsletter, INFORM, Volume IX, Number 1, Winter 1994.
Ms. Daily makes three statements early in her discussion:
1. Personality is the sum of the behavioral and attitudinal characteristics that give each one of us our individuality.
2. Our personalities are the result of the complex interaction between our native abilities, our experiences, our values and the mechanisms we have developed to help us make sense of our lives.
3. Personality is the habitual way we organize and present a coherent picture of who we are to ourselves and to others.
So personality is a very complex trait, one which may indeed change over time due to our interactions with the world. But, that doesn’t explain one example given:
“For example, sometimes people find themselves crying when they aren’t sad or laughing uncontrollably at something that is only mildly funny.”
This is called Pseudobulbar Affect (PBA) or Pathological Laughing and Crying (PLC) which is prevalent in an estimated 10% of MS patients and is generally associated with the later stages (chronic progressive phase) of the disease. See Schiffer R, Pope L. Review of Pseudobulbar Affect Including a Novel and Potential Therapy. The Journal of Neuropsychiatry and Clinical Neurosciences. 2005 Nov; 17:447-454. [Note: For a historical view of MS and affect, explore the secondary sources cited in this article.]
However, it was the discussion in Merely’s Sharepost of the potential misdiagnosis of Bipolar Disorder (or other mood disorder) instead of Multiple Sclerosis which caught my attention.
How many patients are diagnosed with a Mood Disorder or Mental Illness before they are later found to have multiple sclerosis?
In my case, I was diagnosed with depression years before developing optic neuritis and eventually diagnosed with multiple sclerosis. I find the following article abstract an exciting peak into the connection of cytokines (which help to regulate inflammation and immunity) and depressive symptoms. See Gold SM and Irwin MR. Depression and immunity: inflammation and depressive symptoms in multiple sclerosis. Neurologic Clinics. 2006 Aug; 24(3):507-19.
"There is strong evidence that depression involves alterations in multiple aspects of immunity that may contribute to the development or exacerbation of a number of medical disorders and also may play a role in the pathophysiology of depressive symptoms. … This article summarizes evidence for a cytokine-mediated pathogenesis of depression and fatigue in MS. The effects of central inflammatory processes may account for some of the behavioral symptoms seen in patients who have MS that cannot be explained by psychosocial factors or CNS damage. This immune-mediated hypothesis is supported by indirect evidence from experimental and clinical studies of the effect of cytokines on behavior, which have found that both peripheral and central cytokines may cause depressive symptoms. Emerging clinical data from patients who have MS support an association of central inflammation (as measured by MRI) and inflammatory markers with depressive symptoms and fatigue. Based on the literature reviewed in this article, subtypes of MS fatigue and depression may exist that are caused by different pathogenetic mechanisms, including inflammation and CNS damage as well as psychosocial factors or predisposition. The existence of these subtypes could have important clinical implications. For example, an inflammatory depression may require different therapeutic approaches than a reactive depression in MS. Future research should aim to characterize these subtypes better with the goal of optimizing treatment."
How many patients are diagnosed with a Psychosomatic Disorder or are told "It’s All In Your Head" when they experience neurological symptoms?
Meet Clare C. who is still yet-to-be-diagnosed with multiple sclerosis or other disease of the Central Nervous System. She is in what we refer to as Limboland having had periodic bouts of neurological symptoms, including Optic Neuritis, but no clear diagnosis.
"My first symptom came suddenly 6 months after the birth of my second Daughter in 2004. I woke up one day and my breakfast tasted like mould, my tea my toast. My sense of smell was affected too. It lasted six months and was fully normal after a year."
Clare initially consulted with an Ear, Nose, Throat doctor, then later a neurologist who ordered MRIs which came back clear.
"In 2006 just a little while after my sense of smell had returned I started feeling numbness in my left eye, and left side of my face. Then I had started getting dizzy having vision problems, vertigo I felt like I was in a goldfish bowl looking out."
It wasn’t until Clare began experiencing crippling headaches that she visited her doctor who referred her to a neurologist.
"The first appointment was pretty uneventful; although her first conclusion was that I probably had a trapped nerve in my neck and psychosomatic issues because I was in a foreign land (I am a British woman living in Germany). I took this at first with a pinch of salt and was pretty relieved that she hadn’t spoken of serious illness."
The neurologist ordered MRI’s (brain and c-spine) which came back clear. Clare was given an antidepressant, Amitriptyline, and tried various migraine medications. Nothing helped. By September 2007, Clare insisted upon seeing an opthamologist who diagnosed Optic Neuritis. This time her neurologist ordered a spinal tap which was positive for Oligoclonal Bands.
"Well I was given 5 days of IV steroids and underwent all the tests for MS. All tests were negative. The steroids helped the vision problems and even the dizziness improved, but the chronic headaches were as hellish as before. The whole time I was there the Doctors had barely spoken to me apart from to ask about possible improvements from symptoms. Nobody had shown any interest in my emotional state and I WAS emotional. I was just at an end.
The day came for release and I was told they were unable to confirm the diagnosis of MS, because the tests had been negative but in light of the symptoms the spinal tap and ON, the possibility could not be written off. However the headache had given them a headache also and they thought that with this as well as other symptoms that I still had, it could be a psychosomatic problem, and they would like to refer me to a psychosomatic diagnostic clinic."
After first reacting aggressively, Clare agreed to at least try the clinic where she spent 9 weeks pursuing a possible emotional trigger to her physical problems.
_"I made a decision to stay open and just see what happens and to take part in everything they offered, but the experts although they didn’t rule it out completely, (we all have days where we feel unwell due to stress) but they were decided that my symptoms were probably not tied to psychosomatic issues. _
My fellow patients were normal everyday people, some had headaches, others back problems, one lady kept losing her voice, another couldn’t feel her hands. A few were businessmen and women with burnout syndrome. Just normal people trying the best they could to deal life the way we all do."
It was over a year later that Clare developed new symptoms: pins and needles, and numbness in her hands, feet, and tongue, in addition to increasing cognitive problems. So Clare consulted with another neurologist who discounted the results of previous tests and denied the Possible MS diagnosis.
"He said he could send me for all the tests but they would all most likely come back normal and asked me how often I wanted to have the tests done before I would admit that I had no physical problem?"
Clare offers the following commentary:
"The problem with psychosomatic is once written in a medical record it will follow the patient forever, whether confirmed, correctly diagnosed through the right professionals or just an assumption from a Doctor.
Another thing that worries me about the psychosomatic illnesses or mental health issues is that this does not mean that these patients are immune to MS or other serious diseases and who makes sure that these patients are heard and not overlooked because of this diagnosis."
The field of psychosomatic disorders is truly fascinating, and the multitude of mind-body connections are so complex that it’s amazing any of us function well at all. For a primer on the connection between neurology, immunology (including autoimmune diseases), and the mind, see Kiecolt-Glaser JK, et al. Psychoneuroimmunology and Psychosomatic Medicine: Back to the Future. Psychosomatic Medicine. 2002; 64:15-28.
Which brings us back to the question - How many patients are diagnosed with a Mood Disorder or Mental Illness before they are later found to have Multiple Sclerosis?
I do not have a concrete answer, but I will offer that in a future post we will discuss the issue of Limboland in greater detail. Looking back on it, I was unknowingly a member of Limboland for 12.5 years before receiving my official MS diagnosis. I was even referred to a psychotherapist for having an anniversary (of sorts) of vague complaints which roughly correlated with the arrival of summer each year.
Here are my questions to you, dear readers: Were you diagnosed with Mental Illness or a Mood Disorder before/after receiving a diagnosis of Multiple Sclerosis? Has it ever been suggested that you were a hypochondriac, or that it was "all in your head"? Are you a member of Limboland and how long have you been searching for a concrete diagnosis?** Please share your story and let’s work together to dispel some of the myths of MS.**** Lisa Emrich is author of the blog Brass and Ivory: Life with MS and RA and founder of the Carnival of MS Bloggers.**
Lisa Emrich is a patient advocate, accomplished speaker, author of the award-winning blog Brass and Ivory: Life with MS and RA, and founder of the Carnival of MS Bloggers. Lisa uses her experience to educate patients, raise disease awareness, encourage self-advocacy, and support patient-centered research. Lisa frequently works with non-profit organizations and has brought the patient voice to health care conferences and meetings worldwide. Follow Lisa on Facebook, Twitter, and Pinterest.