Month: <span>April 2010</span>

In Multiple Sclerosis has a History, I wrote, “I didn’t know lumbar punctures have been used for diagnostic purposes since 1913”. I think that piece of the History of MS jumped out at me because lumbar punctures (aka “spinal taps”) give me the creeps.

Believe it or not, (and I am certain she will disagree with this) my wife’s spinal tap was harder on me than it was on her.

After all her other diagnostic tests were done – Magnetic Resonance Images (MRI), Visual Evoked Reponse (VER), electromyograms (EMG), blood work (CBC, etc.), electroencephalograms (EEG) – the lumbar puncture (SPINAL TAP) was saved for last. It’s the one test that actually answers the question, “is this Multiple Sclerosis (MS)?”

The way I understand it, spinal fluid is removed and sent to a lab which uses electroflouresis and looks for oligoclonal bands – don’t worry, I don’t understand it either. If the oligoclonal bands are present in the results, then they, along with the other test results, make it official: it’s MS. (According to Wikipedia, “Approximately 79%-90% of all patients with multiple sclerosis have permanently observable oligoclonal bands“.

Drawing the spinal fluid is a fairly simple, uncomplicated procedure for the doctor and patient. Perhaps, not so much for the husband/caregiver, though.

I didn’t see it all because of where I was standing when it started, but it looked like a very professionally organized medical procedure. My wife sat sideways on an examining table with a nurse beside her at the table’s end. The neurologist stood behind her with a shiny tray of medical instruments.

My wife’s feet were placed on a round, stainless steel stool in front of her beside the examining table. The stool was adjusted to just the right height for her comfort. (Up front, I want to add there was no stool or seating of any kind for the husband/caregiver). I stood in front of her for moral support and to help her remain still.

A little local anesthetic was administered at the spinal tap site. After a few moments of the neurologist asking, “Can you feel it now? Can you feel it now?”, he was ready to begin.

Knowing that medical procedures have caused me to feel a little faint in the past, I focused my attention on my beautiful wife’s face. She, however, wasn’t really in the mood for deep eye-gazing and so I was pretty much to myself. But I did my job well. I kept her still and provided continuous support.

A few minutes into the procedure my wife, doing as instructed, reported to her doctor, “I can feel that. It’s like a little pressure.”

For the first time, I looked over her shoulder at the neurologist. In response to her report that she could feel something, he reached to his shiny collection of goodies. He chose a syringe with a needle and then he did the oddest thing. He tilted sideways a bit.

I looked to the nurse and she was leaning the same way! And the walls, too!

It hit me. I was fainting!

Quickly, I searched for a place to sit. And right in front of me was the stool for my wife’s feet. Perfect!

Then that little part of my brain that often has the last rational thought before it all goes black, screamed into my dark fog, “No! She can’t be moved!”

Searching around the leaning room in slow motion I saw so many things: the tilting neurologist was focused on my wife’s back, the tilted nurse was focused on the neurologist, my leaning wife was looking at me with big eyes and raised eyebrows (she suspected what was coming), the bright surgical lights were dimming, to the left was a doorway. I fell through it and, as it opened, I saw my landing place in the dark: a surgical chair! I crashed!

Fortunately, the room I crashed was empty and no procedures were in progress!

I leaned back in the chair like I were at the dentist’s. The darkness began subsiding. Slowly, I began gathering my senses and noticed a stack of surgical towels and a sink beside the chair. Grabbing a handful of the towels, I plunged them into the cool running water and covered my face waiting for the nausea to pass and clarity of thought to return.

As soon as I felt like sitting up I began pulling the towels from my head. Immediately, a nurse walked into the room through the other door.

She stopped when she saw me. I was not expected. I tried to grin without looking goofy as water dripped down my head and onto my shirt.

“Can I help you sir?”

“No, I think I’m ready to go back in for more,” I replied. Her eyes widened as she backed out of the door.

I walked softly back into the room where my wife, the neurologist and his nurse were still at it. My head pounded. Sheepishly, I stood in front of my wife. Seeing my pale face and wet hair, she knew her suspicion had been true.

“I almost fainted,” I explained softly.

“I know,” she replied.

“How are you doing?”

“He’s almost through”, she offered calmly, continuing to sit still on the examining table.

“That’s good. I’m here for you, Baby”, I offered.

“I know you are.”

Caregiver’s Tip: When forced to observe medical procedures that may cause you to faint, make certain you have an appropriate landing place before the procedure begins.

Caring for Yourself MS Diagnosis Practical Tips

MS has a history. I highly recommend you explore it for the “big picture” it provides.

“Multiple Sclerosis: a journey through time” is an audiovisual tour of the history of multiple sclerosis. Available in English and German, the online presentation is offered by the German MS Society, Deutsche Multiple Sklerose Gesellschaft (DMSG) and AMSEL Association, a self-help and advocacy organization for MS patients in Baden-Wuerttemberg.

The History of MS gives viewers an excellent overview of the history of this neurological disease beginning in 1395 AD. It’s a very useful educational tool. For example, I didn’t know lumbar punctures have been used for diagnostic purposes since 1913 or that 1972 brought the use of visually evoked potentials to measure the speed of optic nerve conduction as a diagnostic tool for Multiple Sclerosis.

But even more than an educational tool, The History of MS offers viewers a broad perspective. And broader perspectives are important for caregivers.

First, a broad perspective puts your personal situation into a context. It’s easy for some caregivers to feel alone. Others, overwhelmed by the newness of a diagnosis, are confused and without foundation – especially if all they know about MS is the little that most people who are untouched by it know.

Second, because one hears, “there is no cure for Multiple Sclerosis”, the history of medical research is heartening. There is no cure now. But perhaps a cure will be discovered.

Third, having one’s perspective broadened opens one up to experience hope. I’ve considered many times that even if a cure is discovered, it still will not restore the lost neurological functioning. If my wife has lost the ability to walk or swallow, having a cure for MS will only stop those symptoms from worsening. But The History of MS projects into the future, too. It is not unreasonable to think that medical research will, as the presentation offers for 2020, discover a way to repair myelin.

Will myelin repair happen? No one knows. Could it happen? Again, no one knows, but that scientists are imagining it, gives me significant hope!

Website: The History of Multiple Sclerosis

Etiology of MS MS Research MS Support Groups Reasons for Hope

Springtime in the South. I call it “Sneezin’ Season” because the pollen drives my allergies into hyperactive overdrive.

I take one sinus pill at 5:30 in the morning and a different medicine before I go to bed. These are the only medicines I take and they are different colors, different shapes, are in different packages and are dispensed differently. One is in a bottle, the other is sealed in individual packs. No way I could get them confused.

Last evening, I did.

And before I was through, I wasn’t sure if I had taken the proper nighttime medicine or had taken my morning medicine at night. I wasn’t even certain I had taken anything at all!

After scratching my head over what I had actually done, to avoid an overdose, I decided to take nothing (even though I thought I might not have had anything).

I was right. I really had taken nothing. I woke up sniffly and sneezy this morning. I simply confused myself into not taking my nighttime sinus medicine.

I told my wife about my self-inflicted confusion and she laughed. “Imagine how difficult it is to keep it straight when you take all the medicines I take!” She continued, “Sometimes I know I miss taking a medicine because I can’t remember if I’ve taken it or not. So I don’t because I don’t want to take too much. And I wind up taking nothing!”

I got no sympathy from her. Me talking to her about medication confusion is like talking to Noah about too much rain.

But she’s correct. It’s easy to lose track of what medicines one has taken. And the more there are to take, the more opportunities one has for confusion.

I’ve worked for more than 20 years at a children’s home. Our nurses monitor medication administration with documents called MARs (Medication Administration Records). Each time a child receives a medicine, he or she initials the MAR in the proper medicine/date/time location. It’s a record of exactly what was taken and when.

I have no doubt that a personalized Medication Administration Record book will be needed at my house in the future. But after last night, I’m not sure which of us will need it first!

Living with MS

Ampyra [am-PEER-ah], the brand name for a new drug named fampridine-SR, has been approved by the US Food and Drug Administration for the treatment of Multiple Sclerosis. The new drug is the first Multiple Sclerosis drug to enhance some neurological functioning for MS patients.

Dr. Andrew Goodman, chief of the University of Rochester Medical Center’s (URMC) Multiple Sclerosis Center, and his colleague Steven Schwid, M.D. who died in 2008, have studied the newly approved drug for more than 10 years.

Because most MS treatments are studied in terms of the way they slow the disease progression or prevent relapses, this medication required a new way of thinking about evaluating a Multiple Sclerosis medication. Because fampridine-SR restores some function, the study protocols developed at URMC were designed to measure functional outcomes. One study protocol measured the walking speed improvements over 25 feet.

According to the news release on the URMC web site, a significant number of study participants with Multiple Sclerosis increased walking speed by 25%, reported they could walk farther, climb stairs better and stand longer.

In short, this seems like a promising new drug! Acorda Therapeutics, Inc., the manufacturer of Ampyra, has developed a website to provide additional information to patients and physicians.

As with all MS drugs and therapies, there are significant potential side effects. The Ampyra Medication Guide offers these safety precautions:

  • “Your chance of having a seizure is higher if you take too much AMPYRA or if you have kidney problems.
  • Do not take AMPYRA if you have ever had a seizure.
  • Before taking AMPYRA tell your doctor if you have kidney problems.
  • Take AMPYRA exactly as prescribed by your doctor.”

Important Links

Ampyra Web Site
URMC News Release

MS Medications