The diagnosis of multiple sclerosis is difficult. Being tested and waiting for a diagnosis is exhausting for both the patient and their family. Even today, the process can take months, or even years in some cases. The stress of testing, office visits, and waiting can send someone on edge.
I often see articles online on this topic, with a comment added like “I’m afraid of dying …” It bothers me because someone or an article doesn’t do the job of explaining a diagnosis of MS in an easy to understand manner.
Diagnose multiple sclerosis
It takes a long time to get a diagnosis because it is a process of elimination, to rule out other neurological disorders that could be causing the same type of symptoms.
- The process begins with a clinical in-office assessment, during which many things may be noted initially, such as your history. There are indicators that a good neurologist will check, like the Babinski sign. (When the bottom of the foot is scratched and the big toe goes up, not down, this is an indication of a neurological disorder.) Other examples? Hyper reflexes, discoloration of the optic nerve in the eye indicating inflammation / optic neuritis, signs of imbalance or incoordination when walking …
- Then come the many tests – MRI, lumbar puncture, EVR, etc. to look for things like tumors. Many neurological disorders have symptoms that mimic multiple sclerosis such as Lyme disease or fibromyalgia. While MRI is a powerful tool, a neurologist won’t just use this particular test for a diagnosis of MS, as many people like to assume. Why? Because MS lesions may not appear if an MRI is done only on the brain; an MRI should also be done on the spinal cord to check for lesions. Also, spots on the MRI can sometimes look like lesions, but there may be another reason.
- The term “multiple” in multiple sclerosis is important. Why? “Multiple” symptoms in “multiple” parts of the nervous system must occur over “multiple” periods of time. My first relapse lasted ten months – I had both sensory and motor disturbances in my left arm and left leg. Mysteriously, all the symptoms disappeared except for a slight residue in my left arm. I didn’t have my second relapse until more than two years later. This time I became partially blind and wet the bed. When I returned to the neurologist, I was diagnosed immediately – Bingo! There was a multiple occurrence in addition to multiple symptoms in several parts of my body.
- Finally, most often, a neurologist will not give a definitive diagnosis until he is certain that it is indeed MS.
In the meantime, what should someone do during this scoring and waiting game? Try to stay as healthy as possible. Take whatever steps are necessary to sleep, eat, reduce stress, and maintain body resistance to avoid a cold or virus. And know that multiple sclerosis is not a death sentence or the end result is a wheelchair. Read on …
A diagnosis of multiple sclerosis
Getting diagnosed with MS is extremely scary. I experienced it myself thirty-two years ago, and over the years I have spoken to so many people about it as a peer-trained MS counselor. The fear of the unknown is overwhelming.
Unfortunately, there are many misconceptions about MS that cause a lot of fear. So, to get started, here are some facts to clear up some of the more common ones:
- No, MS is not fatal (although over the past few decades, complications such as urinary tract problems which led to kidney failure …)
- While there is no cure, there are treatments available to relieve symptoms and to slow relapses / progression of MS.
- It is not congenital. People do not inherit multiple sclerosis directly, although it is now known that a genetic factor is involved.
- It is not contagious.
- Not everyone is in a wheelchair – in the 1980s the estimate was 1 in 4 (25%). Today the statistics are on your side for a better future prognosis, especially with the new treatments available now and the huge research underway.
So what should a person do initially if they are diagnosed with MS? Here are my recommendations:
– Gain so much knowledge and support in the right places. I suggest starting with the National MS Society and other national MS associations at the start. But, there is so much information and so many other resources available that it can become overwhelming, confusing, and perhaps more fearful. Take baby steps when collecting information.
– One of the best sources of comfort and information will come from another person with MS, a peer. However, be selective with who you talk to and use good judgment. Some people you don’t know online can be confusing, misinformed, deceptive and negative.
– Make sure you have a good neurologist who treats many others with MS or who is a specialist in MS. You need to trust your doctor and feel comfortable with him / her. Also, make sure that any other specialists you may need to see (eg physiotherapist, urologist, etc.) understand MS and have treated MS patients.
– Don’t panic if you don’t get treatment right away. It takes time to figure out the right thing to do / do, and the wait won’t have a serious impact on your MS course, for better or for worse. Keep a diary. You will begin to see patterns and learn how your body acts and reacts. An easy way to do this is to use a 12-month calendar, with large blocks for jotting down short notes. It helps to see patterns when looking at a whole month at a time and easier to view.
– Remember that staying healthy is essential – catching illness / infections can trigger a relapse. MS is an autoimmune disease; therefore, the immune system is not functioning properly. When you get sick you can be twice as sick and it can take twice as long to heal as a “normal” person. Relapses often lead to residue (damage). It is a must to keep your resistance in place – diet, sleep, stress management …
Finally, there are many things a person can do to manage their MS. The biggest mistake a person with MS can make is doing nothing or expecting an injection or a pill to fix everything. There isn’t a magic pill or an injection you can take to make it all go away yet. It takes work, discipline, dedication, attitude, and common sense to take care of yourself. MS is still a lifelong illness. Until there is a cure for multiple sclerosis, the goal is to stay healthy, prevent further attacks, and prevent disability.
I am an MS survivor, like so many others. If you are diagnosed with MS, you can be too!
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