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Diagnosis: How to Handle the Beast

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It began with a seemingly benign but persistent tingly feeling in my upper right arm. It was the kind of thing you tend to dismiss and certainly not the kind of thing that makes you rush out to see a doctor.

It could be carpel tunnel syndrome, a pinched nerve, too much time at the computer. It will pass. But days turned to weeks and my arm became progressively weaker. When the arm would be ignored no longer, I visited my general physician, who quickly discovered a pronounced weakness in my right leg as well. Concerned, he wasted no time arranging an appointment with a neurologist, but it would have to wait several weeks.

Soon my other limbs got in on the act and went from tingly to numb to near-paralysis in short order. Two or three steps at a time was all I could manage. Driving or working were out of the question. Ruling out stroke and other immediate threats to life, I was advised to be patient until the neurologist visit.

By the time my (now) husband and I finally sat in a neurologist’s office, all symptoms had completely vanished. He seemed skeptical but ordered a series of tests that included MRI of the brain, spinal tap, blood tests, and evoked potentials (short electrical impulses to arms and legs, needles inserted into muscles).

Several weeks worth of tests and much angst produced only vague results. The MRI of my brain clearly showed a smattering of white spots (lesions) that were dismissed as nothing more than evidence of chronic migraines. All other tests were inconclusive.

The neurologist wasn’t concerned and we were content to put the matter to rest. Relief was short lived when, a few weeks later, that tingly feeling returned. Things progressed more rapidly this time, rendering my limbs useless within days and gripping us with fear.

Again, by the time I was seen by a neurologist, all symptoms were gone, resulting in a normal neurological exam. Repeat tests revealed nothing more than the first round, and we came away with the distinct impression that the doctor questioned my sanity.

In the span of a few months, the cycle repeated three times. Although my general physician verbalized his suspicion of MS, the neurologist would have none of it. “You do not have MS!” His exasperation with our questioning was palpable. “If it happens again, we’ll run the tests again. As far as I can see, there is nothing wrong with you.”

Our lives in chaos, we pleaded with our general physician to refer us to a respected teaching hospital whose doctors were familiar with MS. On the appointed day, two doctors went over the MRI scans we brought in with us. “Did you even look at these?” They sounded almost accusatory. Of course we did. We had these scans in our possession for months and repeatedly tried to make sense of the images.

Feeling rather sheepish at that point, we listened for the long-awaited second opinion. “These spots are evidence of scarring. This is MS.” The scans, along with detailed patient history and neurological exam, all pointed to multiple sclerosis. “Of course, we’ll have to do a series of tests to rule out other diseases, but let’s go over MS treatment options while you’re here.” Going over treatment options sounded fairly definite.

One of the doctors proceeded to draw a graph with lines indicating the nature of relapsing/remitting MS and several types of progressive MS, and how various disease-modifying drugs may help keep me on the relapsing/remitting line of the graph. With no cure, it’s all about slowing progression.

A week later, I received confirmation of diagnosis by email. I don’t know how one is supposed to react when told they have a chronic illness. It’s definitely not the same as hearing you have a terminal disease, but it’s not like hearing you have a broken bone, either. This powerful but unnamed presence in our lives now had a name — and a role in our future.

Our six month odyssey toward diagnosis, while extremely stressful, was rather speedy for MS. You see, there is no one specific test for MS and the long list of symptoms vary widely from person to person. Most people start out with the relapsing/remitting form of the disease, creating a frustrating game of hide-and-seek for both patient and doctor. Diagnosis can take years in some cases, especially if extensive remissions take place. The waiting game is emotionally exhausting.

A sense of relief at diagnosis is common, but then you have to figure out how to handle the beast.

Next: What is Multiple Sclerosis?

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Ann Pietrangelo

Ann Pietrangelo is the author of No More Secs! Living, Laughing & Loving Despite Multiple Sclerosis and Catch That Look: Living, Laughing & Loving Despite Triple-Negative Breast Cancer. She is a freelance writer and member of the American Society of Journalists and Authors. Follow on Twitter @AnnPietrangelo

59 comments

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4:13PM PDT on Mar 27, 2010

My mum reminded me this past week that, when I was around 8 yrs old, I saw an eye specialist because I was seeing black spots. He told us that they are called 'floaters'. More importantly, he told my mum it is usually an indication of issues to come (or something like that).

I was diagnosed with MS in 2001 at age 27 but I had symptoms for at least 5 yrs prior. I got my noticable symptoms 2 yrs after the birth of my daughter.

Did he know something more that he wasn't telling us? Did he know that I had MS? Have I had MS since I was 8 or earlier? What would have happened if we intervened back then?

I realize there is no point for me to hash the past but maybe it could impact other people and their futures...

9:46AM PDT on Mar 17, 2010

My husband first had symptoms in the army in 1950; it took him over 17 yrs to be diagnosed. There was only a spinal tap to tell if you had it; he had three. There was no medicine, no treatment..no hope.
He passed away from a gall bladder attack, and eventually pneumonia.
My daughter now has it and was diagnoses in a very few months. It is lucky for her that she was diagnosed so fast,
and for the medicines she receives and the treatment. The M.S. Society has worked for many, many years on the advancement of knowledge and treatment of this disease.
THANK YOU MULTIPLE SCLEROSIS SOCIETY!!!!!!!!!!!

10:36PM PST on Mar 8, 2010

EVERYONE NEEDS TO BE INFORMED ALWAYS OF DIFFERENT DISEASES-NO MATTER HOW OLD U ARE-THAT IS WHY READING ASND GETTING YOURSELF INFORMED MAY HELP YOU EVEN GETTING A CERTAIN DISEASE OR HELP YOU WITH ONE YOU MIGHT ALREADY HAVE.KNOWLEDGE IS POWER.RATHER READ FACTS THAN FICTION-STAY INFORMED

TANIA- SOUTH AFRICA

10:20PM PST on Mar 8, 2010

thanks for the information

2:46AM PST on Mar 6, 2010

thanks for posting

5:15PM PST on Mar 5, 2010

I really hope that you and others like you get what you need and someday maybe a miracle cure.

2:46PM PST on Mar 5, 2010

More positive proof for CCSVI - I couldn't put the whole story here but just a little blurb from Wayne at CCSVI in Toronto, "Media Event at False Creek Healthcare Vancouver, B.C.... they have now ramped up their CCSVI testing ability, and have been working closely with Dr. Simka from Poland this past week. This facility now offers world-class CCSVI testing. Also they are sending a team, along with UBC, to work with Dr. Zamboni this month, for additional training and consultation.

They have tested many people from across Canada over the last few days, and from what has been indicated nearly everyone is showing blood flow abnormalities on both Doppler and MRV's."

I've got my fingers and toes crossed (in an MS way) that the rest of the country of Canada and countries all over will wake up!

Have you asked your doctor if CCSVI is right for you?

6:04PM PST on Mar 4, 2010

Normally after someone shared personal comments I would offer words of support, but I think this thread is reaching many non-MSers. I wanted to remind people that the diagnosis, CCSVI has been shown to have a STRONG correlation to MS. We NEED vascular surgeons to step up! Neurologists are too comfortable with keeping us ill.
They figure out what comes first, CCSVI or MS, after they treat us for CCSVI. The next step will be legal action which is costly and painful!
EVERYBODY ask your dr if CCSVI is right for you. Educate yoursel and then educate your dr.
I'm tired of my illness being worth more than my health! There are petitions http://www.thepetitionsite.com/1/end-ms-liberation-treatment or http://www.gopetition.com/petitions/the-liberation-procedure.html.

3:29PM PST on Mar 4, 2010

June-I wish you all the best out there. Keep going strong!

a wonderful article-thanks

11:24AM PST on Mar 4, 2010

Kaitlyn K: From the National MS Society --

"MS is not directly inherited, but genetics play an important role in who gets the disease. While the risk of developing MS in the general population is 1/750, the risk rises to 1/40 in anyone who has a close relative (parent, sibling, child) with the disease. Even though identical twins share the same genetic makeup, the risk for an identical twin is only 1/4—which means that some factor(s) other than genetics are involved."

Hope that helps.

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Disclaimer: The views expressed above are solely those of the author and may not reflect those of
Care2, Inc., its employees or advertisers.

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Nice to see people acknowledging that there might be differences between different people.

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