Hello, fellow MSers. I am glad to have found this site. Ever since my first neurologist, who made a competent diagnosis BUT was a disaster in terms of patient care and communication, told me to "do my homework," I have been sifting through internet sites and books to understand the many layers of knowledge in which I suddenly need to become an expert. This site looks like a good one so far, and one that differs from the various nonprofit org sites.
I had had a very slowly progressing clumsiness in my right leg, which gradually became noticeable when dancing, and became a big problem in my karate classes. I knew nothing at all about MS. I had a theory that my leg problem, once I realized I had an ever-present problem that got more noticeable after doing some exercise (karate training, walking more than a mile), was a pinched nerve. I figured I'd work with a doctor to figure out which nerve it was, and work with a physical therapist to restore strength in the muscle groups that became atrophied as a result of the pinched nerve(s). When the neuro finished his clinical exam, he started talking about brain tumors, and ordered an MRI "stat." I could go that night or first thing in the morning. I took the appointment that night.
I showed up at a nearly deserted hospital in Burbank for the MRI, asked directions, wandered the halls until I found the MRI area. I went by myself as my fiancee was out of state, and I didn't tell her on the phone, because I didn't want to freak her out. The next morning my neuro called and said, "The good news is you don't have a brain tumor. But it looks like you have MS. Now, everybody's going to have a story about it, but don't listen to them, as every case is different, your course is unpredictable. Do your homework," or something very close to that. I spent the day at work, during a very busy crunch time (I work in television postproduction), wishing I had time to go online and learn WHAT THE F%$@ this "MS" was. The initial things I found were either frightening in their details or maddeningly vague about specifics. I picked up my fiancee from the airport that night, drove home, made her some food, and then had to interrupt her stories to tell her my news.
Since then we've ditched neuro #1 for being a terrible communicator with no interest or knowledge whatsoever in therapies beyond CRAB and had one consultation with Dr. Norman Namerow at UCLA, a neurologist nearing retirement who used to run the UCLA MS program. He knows people at both UCLA's and USC's MS clinics, and we're looking forward to some good referrals.
My heavy, clumsy leg has gotten a bit worse since early spring, and I definitely feel it worsened sharply after my lumbar puncture. I spent six days in bed with the Mother of All Headaches because Providence St. Josephs Hospital in Burbank has a policy of discharging LP patients right way, making them walk down the halls and through the lobby to their cars, rather than letting them lie down for a couple of hours to make sure the hole has healed. "Only ten percent of LP patients get the headache," they told us; apparently the bean counters figured it was cost-effective to make folks march out of there. I had to go in for not one but TWO epidural blood patches to stop my CSF leakage. As I was dehydrated and tenderized from a week in bed in pain (and in a heat wave), the blood patch procedure was miserable. Dr. Swank notes in his book that worsening of symptoms often follows LPs; I believe that happened to me.
Ah, Dr. Swank. I've been following the diet for about six or seven weeks. Mostly it's not too different from the way I ate before, but I did have to give up chocolate (except in mockingly small amounts), red meat, butter, and CHEESE... the chocolate and the cheese are the worst. I have to keep telling myself it could be a LOT LOT LOT LOT WORSE. I have read some people's descriptions of the side effects of the CRAB drugs, Copaxone, and even LDN, and I am horrified. I helped my dear uncle try to fight AIDS, and I remember his reactions to chemo and AZT. The drugs sound so nasty, they have a low efficacy rate, AND, since it's pretty apparent that I have PPMS, for which no drugs have been clinically shown to provide a benefit anyway, I am not going for any drugs at this time. And so avoiding some tasty foods is a small price to pay.
I fear that I sound unappreciative of the fact that I am still very functional, and that I don't go through the hardship of daily or 3x a week injections. I hope I am not unappreciative. I try to count my blessings, of which I have many.
I am dealing with having to abandon my profession, for which I trained many years (and for which I accrued enormous student loan debt), and the lifestyle changes and the bloody UNCERTAINTY that we all face certainly affects me. I can't run anymore, but I can walk today; I don't know if I will be able to walk in five years. We want to have a child; I have a fear of having to watch him or her play from a wheelchair, instead of being up and kicking a soccer ball around. For those readers with much more severe impairments, please don't judge me harshly -- I am still new to this life adjustment, and it is scary.
When my current show is over in a few days, I will be able to start reading the stack of books lent to us by my fiancee's colleague, who has MS. I thirst for information about how the disease works, what is known, what are the frontiers of scientific knowledge, and especially about PPMS.
Are there any people on this board who have PPMS and are taking a drug, or are doing the Swank diet or some other CAM approach?
Thank you for letting me introduce myself/rant/tell my short history. I'll be checking back as this journey proceeds.