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.
In addition to the fallibility of diagnostic tests and procedures, a definitive diagnosis may be delayed because of the very criteria used to make an MS diagnosis. According to the National MS Society your doctors need to objectively observe two things to make an MS diagnosis and these are:
1. There needs to be evidence of two areas of myelin loss or lesions separated in time and space. They need to see lesions in different places within the brain, spinal cord, or optic nerve and at different points in time. So sometimes it is just a waiting game to see if you have more lesions over time and in different places. And too, if you have only had a single episode of symptoms they are most likely not going to give you a diagnosis of MS. In my situation I was waiting over ten years before any new symptoms showed up.
2. They also need to rule out any other MS mimics which may cause similar neurologic symptoms such as Lyme disease, a B12 vitamin deficiency, Diabetes, Lupus, etc.
Until these criteria have been met, they usually will not give you a diagnosis of Multiple Sclerosis.
So what can one do in this state of limbo? Are there any ways to speed up the process of diagnosis?
I can’t stress this enough but you need a good doctor who will listen to you. At any point during your diagnostic journey you will need a doctor who is both a good listener and a good communicator. You need a doctor who is responsive and can answer your questions even if it is to say that he or she doesn’t know the answer at this time but is working to find out. Remember too that you can always seek a second opinion if you are uncertain about your doctor’s conclusions or lack thereof. You may also wish to seek out a doctor or treatment center specializing in MS.
You want to keep a symptom diary of sorts. Don’t make yourself crazy but try to keep a written list of all your symptoms, when they begin and end, if there were any precursors such as infection, illness, or feeling overheated, and also how severe or disabling the symptoms are. Bring this list with you to your doctor visit.
If you can, obtain doctor’s reports, letters, and test results so that you have these on-hand. If you have had any MRI’s you need to get a copy for yourself. These can now be put onto a computer CD. Whenever I get an MRI, I ask the technician ahead of time for my copy. They need to give this to you and for free. It only takes a few minutes and is not an inconvenience. You would expect your neurologist or doctor to have these scans at the ready for your visits. I can tell you firsthand that they usually do not. And then it is sometimes months before you have another chance to discuss your results. When you see your doctor or neurologist, you can speed things up by having these reports, test results, and scans with you to show.
What sorts of questions should I ask my doctor to expedite the diagnostic process?
What are you looking for? Be bold. Be assertive. And be direct. When I went to my general practitioner with my list of symptoms I asked him if it was possible that I had MS. He told me honestly that he didn’t know yet but that due to my symptoms this was a distinct possibility.
What tests will you be doing? What diseases will you need to rule out? How long will it take before I am informed of the results. Any time you are asked to have a medical test or procedure done you have the right to ask why it is being done. You might want to also know how invasive, uncomfortable, or painful the tests might be. You want to ask why the test is being performed and when you will get your results.
What do these results mean? The reports that sometimes accompany your test results sometimes sound like jibberish as they are written in doctor-ese. Have your doctor explain anything you are not sure about and the implications for further testing and getting a diagnosis.
How will you treat the symptoms that I do have? With or without a diagnosis you will want to have some confidence that there will be something your doctor can do to treat the symptoms you are experiencing.
The journey to diagnosis can be both frustrating and emotionally grueling. Until you get some sort of diagnosis you have to deal with uncertainty. Knowledge is power. In the spirit of MS awareness month, both patients and medical professionals can help to speed up the diagnostic process by being more aware of what MS is and how symptoms can manifest. I would encourage you to read the information given on this site and to ask questions to increase your knowledge about Multiple Sclerosis. Whether you are already diagnosed with MS or are still in a state of limbo, we are here to help and provide support. Please don’t hesitate to share your stories with us here. Whatever you are currently dealing with, remember that you are not alone.