Being diagnosed

My spouse was diagnosed with MS in the fall of 2006. Since that time the journey we have taken has been a whirlwind of change and adjustment. Realistically, I believe he had MS for many years before he was diagnosed. The signs were there–dragging foot, progressing to leg weakness, and then difficulty standing straight when he was tired. His father had MS, back in the day when there was no treatment. He died before he turned 50 and was bedridden most of those last few years. With that family history you would think Lynn would have been diagnosed early but that was not the case. As with many MS patients, he symptoms came and went. Being someone who hated to go to the doctor, he let the symptoms go. When I would nag him about asking his doctor if he had MS, he would assure me that he had and that he didn’t have it. Knowing him, I was sure that on the rare occasions he went to the doctor, he was minimizing what was happening (if he said anything at all). Back then he felt great. In fact, if you asked him how he was doing he would say, “If I was any better, I couldn’t stand myself.”

Lynn has always been very health conscious. He eats a healthy diet, has always exercised regularly, tried to live a relatively healthy lifestyle. He had a good mental outlook on life, had lots of things he enjoyed doing and was talented in many ways. His spiritual life was strong–he had/has a solid foundation in Christ and was active in his church home. Life was good.

Then I noticed him one day wiggling the fingers of both hands and watching them closely. I asked him what he was doing and he mentioned that the fingers on his right hand were slower than the fingers on his left. That alarmed me. I told him that something might be wrong in his back (not mentioning that I thought it was MS) and that he should have it checked out. He told me not to worry. I insisted something might be wrong and asked to accompany him on his next doctor’s appointment so I would know what was being discussed. He agreed.

His next appointment was with a cardiologist. He has a mitral valve prolapse that is being monitored but he has no symptoms. Because it could one day require a valve replacement, I usually go with him to those appointments. I work in the hospital where he goes for doctor’s appointments and knew his physician. After his examination of Lynn, he asked me if I had any concerns. I told him not about his heart but explained my concerns about what I had seen. He asked if I wanted him to get Lynn an appointment with a neurologist and I said yes. That’s how he came to be diagnosed.

First the MRI showed lesions. Then there was the lumbar puncture. (If you have never had one of those, they numb your back and put a needle into the spinal column to withdraw spinal fluid to test). His test came back positive for MS.

We got the news on our way back from a weekend at Hatteras fishing. I knew what the verdict was going to be before we got the call. I had watched Lynn barely able to walk back and forth from the beach to the motel room. I saw him unable to stand up straight like his back was made of melting butter that would thicken up if moved away from the fire but then begin to puddle and shrink if moved closer to the flame. I think we both knew but were praying we were wrong.

The call came over his cell phone just before we arrived home. He took it while he was driving. I knew from his end of the conversation what was said. I held his hand and neither of us spoke. We got home and I started to unpack the car. He stayed outside. When I came back he started to cry–not so much for himself but for his son. He knew what it was like to have a father with MS; to see the struggles and to know that he might have that same struggle in the years ahead.

After we both cried, we both prayed. We prayed for strength to face what was ahead and to make the right decisions about whatever options we were given. The caller had offered to set up an appointment with a neurologist who was also doing MS research on the effectiveness of taking two of the common MS drugs together to see if they reduced the occurrence of exacerbations. We said that would be good and so we started down the road to living with MS.

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About mscaregiverdonna

I am a full-time caregiver for my spouse who has Multiple Sclerosis while I try to work full-time, take care of our home, and handle any number of other functions that used to be shared by the two of us. I'm learning that it's amazing what you can do when you have to and when you have God to send you the resources you need to manage moment by moment.
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