Category: <span>MS Diagnosis</span>

Published December 30, 2010 by

Wishful Thinking: What If It Were Not Multiple Sclerosis?

It’s an odd thing I sometimes consider. (Trust me, I’m not crazy) – but once or twice a year I wonder, what if the neurologists are wrong? What if my wife doesn’t have Multiple Sclerosis? What if she has something that looks like MS but isn’t as bad?

I know it’s wishful thinking. And I know why I wonder. I so want her MS to be something else – something that has a cure. Something that isn’t “progressive” (and isn’t that such a sadly ironic word for a disease).

When I first start to wonder, I find it easy to feel hopeful. MS is one of those odd diseases that seems to take forever to diagnose. It took a lot of visits to doctors and a lot of tests to get a firm diagnosis. The diagnostic process sets one up for doubt.

On the other hand, take a normal health problem.

If you break a bone, you usually remember exactly how it happened. You go to the ER and the doctor looks at your arm and says, “looks like you’ve broken your arm.” Or maybe the diagnosis requires an X-ray. The doctor pops it on the light board, looks at it and says, “yep, look here, you’ve broken your arm, here’s a cast, you’ll heal just fine.”

MS is so unlike that.

When we were told the diagnosis, I told the doctor, “I don’t think that’s it. What else could it be?”

It was a desperate question. “What else could it be?” At the time, I was aware of only one person who had MS. He had been in a wheelchair for years.

Even now, ten years later, I still find myself asking, what else could it be? And after a decade of asking, I see the symptoms, I re-read the lab reports, and I know the truth. It’s MS.

I’ve not talked to anyone about this wishful thinking because it seems irrational. I have a logical mind. I have the evidence and it’s conclusive. Yet some part of me hangs on to the impossible chance that after a visit to her neurologist, the doctor will report with a smile, “Wait, we’ve been wrong! It’s not MS! It’s disease X, Y or Z and it has a cure!”

In case you’ve wondered – and I imagine there are MS caregivers who find themselves wondering as I occasionally do – I’ll share a link to an article on diagnosing Multiple Sclerosis and how other diseases are ruled out through something called differential diagnosis. It serves as a useful anchor to medical reality for me.

Accessing the article requires that you register for a free subscription to the online “Journal of Neurology, Neurosurgery & Psychiatry with Practical Neurology“. You will be prompted to login or register. The article is “MAKING THE DIAGNOSIS OF MULTIPLE SCLEROSIS” by Dr. J. Palace.

When you find yourself wondering about the diagnosis, you have a few options:

1) You can ignore the wondering. However, if you do, it will always be there in the back of your mind. It’s better to address it.

2) You can always talk with the doctor and ask her or him to walk you through the diagnostic information again.

3) And finally, if you already have the irrefutable evidence and just wonder as I occasionally do, call it what it is: wishful thinking. Everyone is entitled to a little wishful thinking every once in a while.

However, avoid letting your wishful thinking distract you from reality. Reality is where you must live, move and have your being. MS is what it is. You’re a caregiver, so take good care.

(As an aside, if you’re interested in reading about research into MS, the free subscription to the online “Journal of Neurology, Neurosurgery & Psychiatry with Practical Neurology” is a great deal. The journal articles and study results are excellent.)

Caring for Yourself MS Caregiving MS Diagnosis MS Research

diagnosing Multiple Sclerosis differential diagnosis neurologists wishful thinking

Published April 19, 2010 by

Spinal Tap, 101

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

electroencephalogram electromyograms lumbar puncture medical instruments MRI neurologist oligoclonal spinal tap visual evoked response

Published September 7, 2007 by

What Radiologists Look for on an MRI for Multiple Sclerosis

I am not a doctor. Nor am I a radiologist. Being a caregiver, though, makes me incredibly curious about the medical details related to my wife’s multiple sclerosis. I like to know what my wife’s doctors are talking about and I’m fascinated by how “fearfully and wonderfully made” we are.

So much can be discovered with a little light. As a caregiver, you’ve probably seen a doctor slip the top edge of a Magnetic Resonance Imaging (MRI) image into the clip on a light box. The MRI results I’ve seen look like large photographic negatives. If you remember the old x-ray pictures, you’ll have the right idea.

The light box, usually mounted on the wall of the examination room, illuminates the MRI by shining an even field of light through it. At home, without a light box, when I want to look at one of my wife’s MRI images, I hold it up to the light and do my best. All I know about what I’m looking for is that the white spots are probably not good.

Guess what I found online. An illuminating article is available on “The Radiology Assistant” website.

Frederik Barkhof of The MR Center for MS Research, of the Radiology Department of the ‘Vrije Universiteit’ Medical Center in Amsterdam has provided a review of his presentation for a Neuroradiology teaching course for the Dutch Radiology Society. Barkof’s presentation was adapted for “The Radiology Assistant” by Robin Smithuis, general radiologist in the Rijnland Hospital, Leiderdorp, the Netherlands. It is fascinating stuff!

Barkhof’s presentation focuses on the role of MRI in the diagnosis of Multiple Sclerosis. The information available at http://www.radiologyassistant.nl/en/4556dea65db62 is excellent and filled with examples which explain actual MRI images.

If you’ve ever wondered what those white spots on an MRI of the brain mean in the diagnosis of Multiple Sclerosis, explore the article on “The Radiology Assistant”. While it may not help with the specific details of the MRI’s you have an opportunity to see, the article does provide a broad background for MS caregivers and encourages an appreciation for what radiologists and neurologists look for and see when they look at an MRI.

Caregiver Tip: Learn as much as you feel comfortable learning about the medical issues related to multiple sclerosis. The more you understand multiple sclerosis, the more comfortable you’ll feel asking important questions and the more confident you’ll feel in your role as caregiver.

MRI MS Diagnosis