MS, no way!

I hate to be negative, but I’m not adjusting well to my MS and I’ve had it 18 yrs. At least 18 yrs ago I was dx’d with MS.

I read about folks who struggle for years to get a dx of MS. I had double vision for a short period of time. My family doctor sent me to a specialist to have my vision checked out and he subsequently had me get an MRI.

By the time I saw the opthamologist my double vision had gone away. The MRI though showed a pattern of lesions that was very typical of MS. So, at 50 yrs old I had MS!

Yikes! So what exactly is MS I thought. I felt fine. I saw an MS specialist at a clinic in Michigan where I lived. I still remember entering the building and thinking ‘wow, I’m not anything like the patients here! They are obviously disabled. The neurologist I saw briefly looked at my MRI film and smiled. That was reassuring as I didn’t want this disease anyway~ He didn’t say ‘OMG, you are doomed. Instead he was kind and lighthearted, which led me to think that it was nothing to be concerned about. I asked my questions and felt relieved, but at the end of my visit, the neuro offered me a ‘take home’ brochure and video on Avonex. Hmmm…So I read the info, didn’t feel any more certain and surely didn’t want the unpleasant and uncertain effects of that DMD, let alone the needle stick.

I was fine I thought, so I turned it down and went merrily along my way. Over the course of 14 yrs I lived without any other symptomology until I did begin to notice balance issues and fatigue. I had been through an ordeal with the care of my parents who were very ill. It was a lengthy and exhausting time; easy to become exhausted just from that.

I’d had a few MRI’s over that time and things appeared stable. I began to decline though.

By this time I’d moved twice (for hubbys job and eventual retirement) and saw a new neurologist. I didn’t like him at all; he and his PA were dismissive and perfunctory. I found another neuro. He did an MRI and thought I had some progression. He, naturally, recommended a DMD. I took home more literature on the latest DMD’s and shuttered at the thought of taking any of them. I read and searched MS blogs and sites on the computer. It took me a while to agree to taking a DMD. We decided on Copaxone as it was not an interferon and seemed to be the latest and greatest.

I proceeded to inject daily, 1st with the autoject and later without it. I did that diligently for two yrs; the third has been very hard. I actually feel worse and even though I know not to expect any obvious change, it has been puzzling to me.

I also feel sad that most neuro’s rely heavily on treating MS chemically, with nasty drugs that have their own side effects. I’m very sensitive to medications and can’t take most of them.

I take meds to help me fall asleep and then meds to help me stay awake (so puzzling). Frustrating. Right now I feel like my brain thinks night is day and day is night. I try to go to sleep at a reasonable and normal time, but it just doesn’t work out, so I’ve adjusted to this strange ‘day’ of mine.

I feel horrible for my husband as it’s impossible for our spouses and caregivers not to be affected by our MS. We work it out as best we can; after 47 yrs together not much surprises or deters us.

It would take too long to list all my MS woes, the strange sensations, new symptoms, depression, confusion and so on. Everyone of us is unique, but united by this disease and we are in different stages, often in denial, and sometimes fortunate to seem to have overcome this monster.

The future is not certain, but then it never is.

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