Are you in Limbo? Here is what to Ask and Tell Your Doctor

If you visit any support group for Multiple Sclerosis you will undoubtedly meet others who are categorized by their lack of a definitive diagnosis.  This special category is usually called being in "limbo."  I don't have any facts on this but I am guessing that this population of people is probably far greater than those who actually have a diagnosis as this is where we all begin.  One day we start to have symptoms.  And then we look on-line for answers.  We may even join a support group to find others who are experiencing the same thing.  At some point we have that "aha" moment that our symptoms may have a name:  Multiple Sclerosis.  But before one is truly accepted into this group, you have to have a doctor proclaim your diagnosis.  Without it you don't have many treatment options as the cause of your symptoms has not been confirmed.  You may receive less support from friends, family, and employers.  Most of all, the person living in limbo has to deal with this unsettling ambiguity.  Ask anyone who exists in limbo and you will find a person who just wants to know one way or another whether or not they have MS.  It is so much easier to accept and cope with something known than something uncertain and undefined.

Being in limbo is a very emotionally difficult place to be. 

Linda Baker, a freelance writer living in Portland, understands this all to well.  The Seattle Times featured a story about her entitled, "Living in Limbo:  Portland writer awaits diagnosis of MS."   Baker says this about the experience:  "What other people and I hadn't realized, however, is that MS is not simply a disease, but a state of limbo. The symptoms are varied, and may include abnormal fatigue, impaired vision, loss of balance and muscle coordination, slurred speech, tremors, stiffness, bladder and bowel problems, difficulty walking, short-term memory loss, mood swings and, in severe cases, partial or complete paralysis. There is no single clinical or laboratory test for MS, and diagnosis can sometimes take years."   This is true.  There are not that many tests out there to make the diagnosis of MS and even these have their limitations. 

Take the MRI for example.  I will share my experience in that I had a clinically isolated incident of optic neuritis over ten years ago.  At that time my MRI showed no lesions.  Yet a little over ten years later I began to have symptoms and my MRI this time showed multiple lesions.  The million dollar question in my mind is, "Did I have MS back then with that first symptom?"  My subsequent question is "When did my MS officially begin?"  No doctor has yet to answer my questions on this.  My case is just one illustration of this mysterious disease.

Baker (2003) cites a study which further demonstrates the limitations of MRI results: "... a study in the New England Journal of Medicine reported that while 88 percent of patients with abnormal MRIs went on to develop the condition, 19 percent of patients with normal MRIs at the onset of symptoms also eventually developed clinically definitive MS. It is a finding that in the past would have given me pause, but I've long learned to push past the uncertainty."   I suppose that I am then one of those in the 19 percent category.