Finding a Doctor to Treat Your Multiple Sclerosis

by Carolyn Reynolds

I suppose it's a given - a diagnosis of MS means the patient must be under the care of a neurologist. I was unfortunate in my choice to stay with the doctor who diagnosed me, even though I had not been happy with him during the process. Ah well, live and learn.

Out of some sense of who knows what, I stayed with this guy even though I didn't like his manner. On the day he finally chose to tell me the conclusion he had reached after months of testing, he stepped out of the room for a minute, I guess because he thought I might cry, then came back with a word of advice. Or several, it seems.

"Don't think you can fight this thing," he said. "There is no way you can." Then he asked me how I dealt with stress in my life.

"I work through it, I work hard at it till it is gone," was my response.

"Not any more you don't," he answered.

And like the good patient that he wanted me to be, I took the man at his word. Even though every fiber of my being kept telling me not to, I just let the bad roll right over me. I gave in, gave up, just let the MonSter do what he wanted in my life without fighting.

After that, I started finding so many contradictions in my treatment. What was supposed to be good for me one visit was frowned upon on the next. I stayed in such a state of confusion, and none of the questions I asked ever received a decent answer. I should have left him, and didn't.

In fact, I followed his method of treatment, the do-nothing method, until I went completely numb from the waist down and had to be hospitalized. But I couldn't reach him when I needed to, and came in under the care of the neuro who happened to be on call. And she proceeded to retest me, decided I did not have MS but something that needed to be surgically treated, called in a neurosurgeon who ordered even more tests. And the results?? Sorry, you really do have MS.

When he finally did show up on my case, his treatment of me was shameful. Without even seeing me, he wrote orders to send me to a rehabilitation hospital to learn how to use a wheel chair and to avoid "hurting" myself. When my insurance refused, he became angry with me, and coming in very early one morning, he told me if I wasn't willing to follow his plan of treatment, I shouldn't have come to the hospital at all. When I answered that I couldn't move, he responded, "You wouldn't have died." I should have left him, and didn't.

Needless to say, I wasn't in the best of hands for my care and treatment. But I stayed around until he cut me loose in a registered letter saying he no longer felt he could care for me because I didn't follow his orders. He left me on the verge of another major flare, and he knew it. When I did go down again, much the same as the other time, I ended up in the care of a different neurologist, one I liked and who seemed to like me.

I continued along with number two, and between him and the specialist I was sent to, they managed to keep me without a major flare for close to two years. Then, unexpectedly, neuro #2 decided to move his practice across the country. Geez. . . .back on the hunt again.

This time I relied on a friend of mine, a nurse who knew a network of nurses, and asked her to find me somebody good with MS. She and her buddies came through, and I am now with neuro #3, and do hope to stay here. This young doctor seems to be well suited to me, and is compassionate and on top of what is happening with MS. Let's just hope that this relationship lasts and I do not find myself back to fishing the seas again any time soon!

I do really believe that the relationship between an MS patient and her neurologist has to be one of trust on both sides. You have to feel comfortable with the treatment you are receiving, or at least comfortable enough to let him know that you don't want to follow his present plan. That can be difficult, but it is so very vital. Knowing where you want to be, and having someone to guide you there can make your life so much easier. And believe me, we need all the help we can get.

© Carolyn Reynolds


Carolyn Reynolds, is founder of MS MuSings, a monthly online magazine written by and for people with Multiple Sclerosis.