[Catch]

SO, ARE YOU SAYING I’M NOT OLD?
An Essay
By
LS. James

I’m having problems with my memory: It started not too long ago. I’ve been under a lot of stress: the usual things, car trouble, money worries, a son with a drug habit, my husband having an affair. It‘s no real surprise to find my mind misbehaving. Although things in my life have slowly improved, my memory has not. I talk about it with my doctor, my husband, my friends, co-workers. The consensus is: after 40, we all have trouble finding our car keys, glasses, or even car sometimes. Everyone knows the frustration of having a word or name on the tip of your tongue, but not being able to say it.

I don’t normally forget words. They flow effortlessly off my tongue. And as for being “on the tip of my tongue” that’s not even near the case. It’s like there’s a blank space where certain words used to be. I’m not forgetful some of the time—I forget things ALL of the time. My doctor tells me not to worry about it, she says it’s not Alzheimer’s.

I begin to do crossword puzzles to try to keep my brain flexible. (Not that I notice any great improvement.) I write out to-do lists before running errands (although I forget to bring the list).

I also begin to feel a burning in my thighs and getting winded after walking up one flight of steps. I guess I’m really out of shape. I’ve never been Ms Fitness America, but it’s hard to believe I’m that out of shape. Still--I have to face it, I am Middle-Aged: Pushing 50—wrinkled-gray-haired-bifocal-wearing-saggy-assed-pee-when-I-laugh-old. It’s hard to find the humor in that. I pick up a yoga mat and book and spend an hour a day improving my strength and stamina. It doesn’t seem to be working.

When I visit my GP about the migraines I’ve been having, she tells me that as a general practioner, she’s done all she can, and she refers me to a neurologist, a doctor specializing in the brain and central nervous system.

Two weeks later I’m in the Neurologist’s office. She completes her exam and we sit down to discuss her findings. The headaches, coupled with my unusually brisk leg reflexes (I could easily kick a field goal), warrant more investigation, and she’d like to schedule an MRI. She mentions that these things could be indicative of MS.

A couple of weeks later I have the MRI. If you’ve never had one, it’s an interesting, if rather boring experience, and surprisingly noisy. The next week I return to the neurologist for the results where she shows me some “white spots” on my brain. These could be MS lesions, or nothing. I’m thinking that unless I’m a Dalmatian, my brain shouldn’t have any spots. She recommends a second opinion and refers me to the MS Clinic at UCLA.

I’m now a little concerned and begin researching MS online. The list of symptoms for MS is LONG. Everything from paralysis and blindness to incontinence to forgetfulness, fatigue. Headaches, ringing in the ears, blurry vision, numbness, tingling, sharp shooting pains. Even extreme itching. The current research indicates MS is an auto-immune disorder where your anti-bodies begin to attack the protective coating of the central nervous system. It seems that any nerve can be affected at any point in the brain or spinal cord to any degree for virtually any length of time. Some of the damage is mild, while some can be severe. Much of the damage to the CNS is temporary, but it can be permanent.

Within a few days of my research I know I have MS. I am as sure of it as I am sure of my own name. Of course, friends and family reassure me. You don’t have MS, they say. You’re just getting older. But the symptoms, I say, I have lots of those symptoms. Taken individually every one of them can be explained as something harmless. Many of them, like memory, blurry vision, pain, are generally age related. They tell me to try to relax, I’m just making the “symptoms” worse by worrying. It’s still a month before my appointment with the specialist at UCLA.

At UCLA the doctor does her exam, looks in my eyes, tests my reflexes, has me walk on my toes, jots down my history, and schedules more tests. Now becoming an excruciating wait, they are scheduled 3 and 4 weeks out. A week for results and another week before I can review the results with the doctor. I’m just supposed to relax and tell myself it’s nothing.

Start to finish the process took more than four months for the diagnosis. When the doctor announces to me that I have MS, it’s so off hand, like I’d known it all along, and while I guess I did, there was that part of me that was sure it was nothing. When she starts to discuss medication options, though, it really sinks in and my initial relief that I don’t have a brain tumor or Lou Gehrig’s disease wears off pretty quickly.

To look at me you’d never know there’s anything wrong, which is the case for many with MS. Of course, the numbness and tingling are invisible, and my twinges and aches are not all that painful—usually some Alleve is all I need. No one can see all the words I’ve forgotten, or how I have trouble remembering how to spell. I have no problems walking, driving or working. I look the same now as I did four months ago, and don’t feel much different, either.

I have trouble remembering my schedule, my mind blanks and I’m easily confused, especially when I’m tired. I hate not being able to remember names, places, dates. I can easily lose track in a long conversation. I even have trouble spelling now--I tend to transpose letters a lot, like I suddenly developed dyslexia.

It’s frightening to have a disease that messes with your mind. At least MS, with medication, it’s hoped that it will not progress, at least not quickly. I put things away in the same place or I can’t find them later. If I do lose something, I can’t find it without cleaning the whole room, or even the whole house. Then I’ll find it, though I will have forgotten what it was I had been looking for. Sometimes I think it would be easier if I used a cane, although I’d probably forget where I put it. I’m learning ways to compensate for the forgetfulness (my desk is covered with post-its, and I have so many reminders on my computer it sounds like a game boy).

Like everyone else with MS, I have no idea what my future holds. Of course, no one knows their future, but we always think we know. At least we plan our future. Now I plan around MS and potential problems. I’m still doing yoga, and have added Tai Chi. I can meditate now, because my mind clears very easily. It’s like smoking herb, without the cost or the cough. Without even trying I’ve started to live the Buddhist philosophy: living in today, trying not to concern myself with tomorrow, because it may never come, and you can’t do anything about yesterday. ****, most days I can’t remember yesterday.


I am very lucky. Lucky that my GP sent me to a neurologist who picked up signs of possible MS, who then sent me for tests my insurance company would pay for. Lucky that I live in LA and have access to UCLA and the MS Clinic. Lucky that I was diagnosed in 2007, not 1977 when there was little information and less hope.

Lucky I can say, at least for the moment: “I’m not old-- I have a demyelinating condition!”

[the Bird]

Hey Catch!

We have a great MS group here....come visit us in the MS forum!

You were actually one of the few lucky ones to recieve a dx so quickly. Most of us take years.....

Come join us! See you there!