Medically Reviewed by Jacque Parker, RN
Typically when a diagnosis of Multiple Sclerosis is given, it means the patient must be under the care of a neurologist. It so important to be happy with the treatment you receive from your doctor.
Unfortunately, the doctor that diagnosed me was not good at treating my symptoms.
I stayed with my first doctor 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.
“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 followed the doctor’s orders without fighting.
Soon after, I started finding 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 neurologist who happened to be on call. And she proceeded to retest me, decided I did not have Multiple Sclerosis but something that needed to be surgically treated, called in a neurosurgeon who ordered even more tests and confirmed that I did not have MS.
The neurosurgeon 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.
Needless to say, I wasn’t in the best of hands for my care and treatment. But I stayed around until 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 this doctor, 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, the next neurologist decided to move his practice across the country.
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 Multiple Sclerosis. She and her buddies came through, and I am now with my most recent neurologist, and do hope to stay here. This 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 their 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.
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Carolyn Reynolds, was founder of MS MuSings, a monthly online magazine written by and for people with Multiple Sclerosis.
