Multiple Sclerosis : Ed's Story
On December 11, 1999 , I was taking a mile walk when my legs slowed down and all but stopped. I also felt "out of it", though it wasn't anxiety. It took me 60 minutes to make the ten minute walk home. After resting for three hours I was able to walk some but had odd symptoms. I could not attend the family Christmas party because of this unidentified feeling of unease, which wasn't quite anxiety. I could walk only about 25 feet, then I would get what felt like two live wires touching in my head - a sort of bang, then quiet.
I was fortunate because I was able to stay at a relative's home and because work was off for the Christmas holidays. For about six months before this I had turned down the contrast on the computer screen at work, little by little, until only I could see it. If it was any brighter it gave me anxiety attacks. My family urged me to go to the doctor so and I had a heart check-up because I have a heart history and because one of the symptoms was hypostatic blood pressure and weakness. But the results were normal.
In February the doctor referred me to a neurologist and she sent me for an MRI for evoked potential (eye and ear tests), and she did a spinal tap (lumbar puncture). The MRI came back abnormal (3 lesions), the spinal tap came back normal and the evoked potentials came back normal except for one eye which was a little slow. The doctor said it looked like MS and said there was an MS clinic nearby where they now had pretty good medicine.
I read the books in the local libraries about MS, about 10-12 in all, to find out as much as I could.
During this time I had many symptoms: if something worked before, it now only worked half-way. These symptoms included feeling like I was walking on wooden boards, pain in my arms and legs, fatigue, head pressure, crawling sensations under my scalp, loss of manual dexterity, low blood pressure, light and sound sensitivity, inability to walk more than 25 feet, and generalized anxiety at times.
I also had cognitive symptoms: I lost the sense of time, at the worst time I lost a sense of self and I suffered short term memory loss. I would stand at the bus stop and have to keep reminding myself why I was standing there. When I spoke to the doctor, after a few minutes I couldn't tell if I had been there for ten minutes or two hours. For two days in late February I couldn't read since words meant nothing, I had strong central pain in my head and I had lost most of my ability to have feelings. I had lost a sense of self, my will was really unable to act. It's hard to describe - I felt like only a physical body and figured I was going to die. The books said that MS hits men a little worse than women in intensity and that some types just get worse with no let up, especially if it is noticed at a later age - I was 39.
On the last day of February I felt all this very badly and I had a sense of stupor that made it bearable but also difficult. Oddly, on March 1 st 2000 , I got a clear and substantial improvement. I'm Catholic and I'd prayed to Cardinal Terence Cooke (a previous Archbishop of New York) to let happen whatever he wished, good or bad. His birthday was March 1st, 1915 . So it was on his birthday that I felt a significant improvement and over the next ten months or so the physical symptoms gradually went away. I could even ride the bus without feeling I was going to topple over.
In May I saw an MS specialist who said I could not be diagnosed on the basis of one attack and a suspicious, but not highly suspicious, MRI. By the MacDonald Criteria I would need five or more lesions in the brain to make a diagnosis and I had one clear one and two smaller ones. She told me I would have an MRI each year and they would keep track of me. Every MRI since then has shown the same lesions, but with no change, not even with contrast.
Since March of 2000 I have gotten steadily better - the cognitive symptoms took longer to disappear but eventually weakened and went away also. I got my sense of self back, sense of time, and short term memory. The only symptoms that remained were a small lack of balance, which eventually went away, and hypostatic blood pressure. After awhile I got tested, and my Cortisol level was five (the normal range is between 10 and 49). They thought this might be driving down my blood pressure and making me weak, unsteady. So I ate salty foods and drank a lot of liquids and on the re-test I measured 15 and felt better.
I've been on the Swank diet since that May (the doctors say it doesn't help MS but that it is a healthy diet). I haven't gone on the Best Bet Diet because I'm not confident about taking that much calcium. I've read posts on an Internet support forum since that time even though I'm not diagnosed yet. (I've read that support groups have a positive effect on MS disease progression.) I take supplements of fish oil, cod liver oil, flax seed oil, evening primrose oil, and sunflower seed oil - these are part of the Swank diet and are in Dr. Jelinek's book (Taking Control of Multiple Sclerosis). I also get regular rest (I feel bad when I don't) and exercise as much as I can. The oils make it possible for me to avoid most saturated fats.
I know I could get sick at any time, but for now I'm feeling well. I might have MS, or I might have had a virus that got into my brain, did damage and will wash out.
I'm going for the annual brain MRI soon, I bought a juicer which will arrive soon and I'm reading about food allergies. The MS neurologist retested me, since four years had passed, and the visual evoked potential test on my eyes came back normal (which she said is very unusual, since these tests only correct themselves in children). She did not see a reason to repeat the spinal tap at this time. I had a spinal MRI over the summer and it came back negative (one lesion on the spinal MRI can be enough for a diagnosis).
So far, so good!