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Diane's personal relationship with MS

On Memorial Day, 1995, Diane woke up with a sore knee.  It didn't feel exactly asleep or exactly bent, but a little numb, and she assumed she'd slept on it wrong.  As the week went on, her skin started to feel sensitive to the touch, and she started developing some bladder problems, as well as feeling generally "blah".  Then on Saturday, she was admitted to the hospital, where she would spend the next eight days.

On Monday, she underwent an MRI of her brain and it showed nothing.  An MRI of her spinal column followed.  There were bladder tests and ultra sounds and electric stimulation tests.  By Wednesday, she asked the attending doctor what they were looking for.  She was told, "Dr. Kini [the neurologist] is thinking MS."  Up to that point, MS was only one of dozens of "initial diseases" that Diane had heard of--MD, MS, CF, etc.  She knew Annette Funicello and Richard Pryor had MS.  (Interestingly, after that, it seems like everyone knows someone who has MS.  It is becoming a smaller world every day!)

Dr. Kini would come to the hospital for rounds late at night, until Diane finally complained that he was coming after her bedtime.  He is a doctor with a sense of humor that Diane continues to consult for her MS treatment.  A spinal tap was to confirm the diagnosis.  When Dr. Kini came to the hospital to perform the procedure, Diane looked over her shoulder and said jokingly, "You've done this before, right?" He said, "No, this is the first one.  Shirley [the nurse], do you have the how to book there?"  Then he hesitated and said, "You're joking, right?"  Diane looked at him and said, "I am if you are!"

Everyone told her, "Find a support group."  This turned out to be among the best advice she received.  She attended a local support group, and although they were a bunch of very nice people, Diane felt she didn't have much in common with them.  No one else was on the same medicine; no one else was single and taking care of themselves; no one else was trying to work full time in addition to dealing with the disease.  Soon, she found out about a support group that was specifically geared toward those on Betaseron which is the medicine she is taking.  She immediately knew she'd found her niche.  In the months that followed as she dealt with the Federal Avaition Administration (FAA) to restore her medical certification, she was approached by the local drug representative about starting a Betaseron support group in her community.  Now nine years later, Diane still leads that bi-monthly support group.

Sentiments that are heard over and over by people with MS include that once they were diagnosed, the symptoms that they were experiencing for years now made sense.  Many people express frustration in not obtaining a diagnosis.  Although MRIs are making diagnosis easier and faster, too many people are still told that the symptoms are "in your head" or "you only need a vacation".  Diane is thankful that she was diagnosed quickly without this ongoing worry about what was wrong, and joins the ranks of those with long-suffering symptoms that now have an explanation.

When Diane was diagnosed, the prevailing opinion in the medical community and within the MS organizations was that a person should have two distinct excerbations before starting treatment with any of the injectible drugs. Luckily, Diane's neurologist recognized the importance of immediate treatment.  Now, several years later, the opinion of those same organizations and doctors is that treatment should be started as soon as possible after the diagnosis of multiple sclerosis.  This is the best treatment to help ensure the long-term outcome of the disease.  In addition to self-injecting with Betaseron every other day (now over 1700 injections without ever missing one), Diane feels it is vitally important to keep informed about the disease and also to take part in a support group.  "No matter how supportive friends and family are, no one understands what you're going through like someone else who is going through it.  Sharing information and tips is invaluable".  Diane says.  Friends she has made through the two support groups she attends regularly are considered some of Diane's closest friends, with or without MS.

As a flight instructor and air traffic controller, Diane must maintain medical certification with the FAA.  The FAA suspended her medical after the diagnosis of MS.  Diane spent six months sending documentation, letters from doctors, and other appeals before the FAA reissued her medical certificate with special consideration.  Now, she has a list of email buddies of other pilots and controllers with MS who have retained their flying privileges.