"Is it easy to diagnose MS?"

Diagnosing multiple sclerosis is anything but easy. There is no specific test for multiple sclerosis and, anyway, it is not even certain that it is only one disease. To an extent, getting an MS diagnosis (dx) is a process of eliminating all other possibilities. Typically, people who have finally been diagnosed with definite MS will have been through several diagnostic stages which I shall try to deal with in this section. This process is often drawn out over months or years. This can be a very unsettling and frightening period for the PwMS - the uncertainty can be very difficult to deal with. Inevitably, I draw heavily on personal experience here - the fears, insecurities and other emotions that I went through may not apply to everyone and I certainly don't intend to shoehorn everyone with MS into my own stereotype.

"So what are the stages in getting a diagnosis?"

Usually, the first thing anyone does when they notice strange neurological symptoms is to go to see their family doctor. "It's nothing to worry about" - "It's a pinched nerve" - "It's the side effect of a virus" - "It's all in your head" - "It's a temporary side effect of a migraine" - "It's Conversion Disorder". These and many other labels are used to dismiss what are very real symptoms. I've even heard of, "You're an alcoholic in denial", being used to dismiss one poor woman suffering with MS vertigo.

Provided that they aren't dismissive of the patient, I don't blame the Primary Care Physicians - MS is a very varied disease with a score of different manifestations. It is common medical practice to assume the most likely outcome rather than the more malign possibilities. Additionally, MS has a score of differential diagnoses (conditions that present with one of more of the same symptoms as MS). PCPs aren't neurologists and they can't be expected to perform neurological examinations with the same level of expertise as neurologists can, nor are they as skilled at interpreting them. This is understandable - a General Practitioner will usually have between zero and six patients with MS on their books and, even then, rely heavily on the patient's neurologist for diagnosis and treatment. I had four neurological examinations in two months - one by my General Practitioner, one by a casualty Senior House Officer and two by neurologists. The difference in skill level was immediately apparent and, although the PCPs detected the more obvious clinical symptoms, both neurologists were able to detect very many more subtle deficits.

"Is this a difficult time for the PwMS?"

Unfortunately, yes. The process of misdiagnosis causes a lot of anxiety. We know that something is wrong - often we fear a plethora of malignant outcomes, including MS, which we generally do not understand at all well at this point in time. We certainly don't need to be told that we are making it all up. I was terrified during this stage - more so than when I finally got a diagnosis and had something to understand and come to terms with.

During this phase, the PwMS may be referred to specialists in completely the wrong field or sent off for tests for completely different conditions. This just compounds the uncertainty. The majority of PwMS first present with relapsing/remitting MS and have often completely recovered from the presenting symptoms within as little as six weeks or less. I was worried about a number of possible outcomes but wanted there to be nothing the matter. Nobody wants to have multiple sclerosis. A combination of my health care professionals' denial and my own enabled me to disregard the disease for many years. Each relapse was entirely different in nature to those that had gone before. Each time I was terrified and each time I apparently recovered completely. During this period, I moved location frequently and was never seen by the same GP twice which must have prevented each from building up a case history. Often times, the PwMS will start to doubt their own perceptions and to believe that they are indeed a hypochondriac. I know I did - it didn't do too much for my state of mind but, in a way, I'm grateful for those years of false freedom from the disease.