A Journey Through Life with Multiple Sclerosis

The Lost Years

Have you said this frequently, have you heard a friend, family member or a co-worker say this?

This is the beginning. Many early symptoms of MS appear years before a diagnosis is made.

They can consist of a "flu-type" episode that just lasts way too long and keeps coming back...or one might awaken with a sprained ankle or wrist that wasn't there when going to bed. It could be overwhelming fatigue. In fact it could be many small things or it could come on suddenly, awakening to a paralyzed limb or unable to feel a leg or arm.

On this journey I am taking you on the more common course... you have the flu.. or is it? It lasts for a couple of months. You are sure you have some exotic disease and wonder if you had received a mosquito bite recently and try and think of where you were, what you could have contacted.

You go to the doctor. Bloodwork, urinalysis, x-rays all come back negative. The doctor tells you he can't find anything, that it is probably a virus or "nerves", not to worry. But you do worry. How can nothing be wrong when you have felt so poorly for so long? How can your wrist be sprained and why can't you use it if everything is normal?

You feel some resentment, because this has happened before.. each time the doctor finds nothing. Now the doctor treats you as if you are hysterical or faking and...  a week or so later everything goes away. So the doctor MUST be right. I must be hysterical or going crazy.. right??? No. Wrong.

Most doctors are not well enough educated in Multiple Sclerosis to look for anything that does not show in routine labs and x-rays. Most don't take that time for a thorough medical history or do a neurological exam. Maybe they did check your reflexes to find they were hyperactive but.. it didn't seem to give them a clue.

You may have pain or vision problems. If you are lucky enough to get an opthalmologist that knows his stuff, and diagnosis optic neuritis you may be referred to a neurologist for a work up to rule out MS. But many cases of optic neuritis can occur behind the optic disk, where it is not seen by the Opthalmologist. As MS is a disease of the central nervous system, the optic nerve is part of that system and runs from your eye to the back of your brain.

Just because it cannot be seen does not mean it does not exist.

By now you have quite a reputation with the doctor. His nurses and even the receptionist calls you by your first name. These are the lost years, where the loneliness and feeling like you have been abandoned by the medical profession or are going crazy pervade your thoughts. When family, doctors and friends are sure you are either lazy or a hypochondriac.. the years when you start to believe they may be right.