One Month Free of Hypochondria

Remember when we were back in grade school and high school? We used to celebrate anniversaries by the week or the month.  You know, you’d be “dating” someone for a month and would give them a card or a gift to celebrate the momentous occasion.  Then, as we aged, we began celebrating milestones annually or even by the decade.  Today, I’m returning to my childhood, and I’m honoring the anniversary of my first full month with M.S.  Well, I should say that I’m celebrating that it’s been a month since my official diagnosis.  We now know I’ve had M.S. for a long time – maybe even a very, long time. Today also delivers a message for those of you who are ignoring your intuition; those of you who know something is medically wrong with you.

 

This month has been a period of significant growth for me; more about that some other day.  The month has also been a period of significant reflection.  When I was diagnosed, I was told that I have 6 or 7 lesions – all but one on the brain; the other is on the spinal cord.  Two of the lesions, at the time of diagnosis, were only two weeks old.  The others had been hanging out, living it up in my brain and on my spine, for quite some time.  How long? No one can really say.  So, in an effort to try to pinpoint how long I’ve had the MonSter, we have spent the month reliving the past.

I’m certain, beyond a shadow of a doubt, that I have been suffering what I’m calling the “silent” symptoms of M.S for three, maybe four, maybe five years.  I call them “silent” because they were annoying, disruptive, concerning symptoms – but not ones that on their own were debilitating enough to land me in the hospital — and independent of each other, weren’t enough to indicate a diagnosis of M.S.  So many M.S. symptoms mimic other diseases, and even other neurological disorders.  The vision (diplopia, internuclear ophthalmoplegia)  and numbness (paraesthesia) problems were the “vocal” symptoms and the ones that led the doctors to suspect I was suffering from M.S.

So, let’s talk about those silent symptoms.  For many years, I was told that I suffered from Panic Disorder.  Three different doctors diagnosed me as such. I fought them every step of the way.  In fact, I was so intrigued I even studied the topic for my Master’s thesis – 12 years ago. I never had the “traditional” symptoms of Panic Disorder and whenever anyone would ask me what I experienced, I’d lead off the description with: “I don’t have the same type of panic attacks that you read about or see on TV.  I don’t have the heart palpitations that force people to rush to the hospital thinking they are having a heart attack.  I have dizziness, almost a vertigo feeling, nausea, and hot flashes that erode into anxiety problems.”  I have yet to be able to determine if I really ever did have Panic Disorder.  I don’t think I’ve had M.S. for more than a decade, so I tend to believe I did have anxiety issues, (and still do to an extent today), but that perhaps the M.S. symptoms later exacerbated those anxiety situations (they’re very similar).  I need to process this more before drawing any further conclusions.

Outside of the anxiety issue, I have suffered a wealth of symptoms over the last several years.  My husband even took to calling me a “hypochondriac”.  In his defense, what would you think if your spouse came home every-other week, complaining of some other odd medical issue, and then guessed at what could be wrong with her? Things would come and go. I would see a television commercial describing a disease; I would look at him and say, “Maybe that’s what’s wrong with me.”  He always said he expected me to come home one day insisting I had prostate cancer.  Now that would have been one for the books!  Honey, you aren’t alone!  Last evening, I viewed a few discussion board posts in my favorite virtual M.S. communities and in a mere 15-minutes’ glance-time I counted 14 people whose spouses accused them of being hypochondriacs recently as well.  

I suffered from serious bouts of dizziness.  I developed the inability to travel in moving vehicles without motion sickness. Traveling, which I loved to do, became a burden and often sent me into bouts with anxiety. It seemed like overnight I became claustrophobic.  I lived on Dramamine and Pepto, and so many over-the-counter meds, that if someone had a headache or stomach ache, they knew to see me first before running to the store.  A couple years ago the doctors thought I may have Meniere’s Disease. For three days in a row, I suffered such violent vertigo, that even the slightest turn of my head sent me heaving into the bathroom for hours.  When I had it under control enough to see an ENT specialist, he ruled Meniere’s out.  He didn’t know what was wrong with me; maybe it was just a virus.

I’d have vicious night sweats, the kind that would soak the mattress through the sheets.  But they only lasted for a few weeks at a time and then disappeared for months and months.  My OBGYN suggested maybe I was peri-menopausal, but apparently only for a few weeks of each year.  I haven’t slept well for so long, that I can’t even come up with a plausible date for when my sleep problems began.  One of the main reasons I don’t sleep at night is because of bladder problems.  Ok, that’s rather private information, but it’s important because it’s a major symptom of M.S.  Even if I didn’t ingest a single, liquid beverage after 7 PM, I’d be up at least a half-dozen times each and every night. Prior to diagnosis, I don’t think I achieved REM-sleep in years.  I have since learned that this is called Nocturia and it’s a very real problem for M.S. patients.  I was scared that maybe I had bladder cancer, but ironically, never once talked to any of my doctors about the problem – at least not with enough seriousness for them to be concerned for me.

Occasionally, while trying to sleep, my legs would twitch and jump under the sheets.  I chalked it up to restless leg syndrome.  But it happened so infrequently, I ignored it as well.  I tried the soap-under-the-sheet trick from Dr. Gott once.  Ok – that I was reading Dr. Gott’s column on a daily basis should have been a light bulb moment for me! I became much clumsier.  I thought I had a sugar issue.  Blood tests said no.  I thought it was electrolytes or some sort of problem with my thyroid.  No and no.  I got to the point that I thought my doctors would think I was a wacko, so I just stopped presenting them, my hubby, or myself with any new symptoms.

Until July of 2007, when my dear friend and former colleague, Cathy Higgins was surprisingly diagnosed with Glioblastoma Multiforme – the most serious type of brain tumor on the market.  I returned home after my first visit with Cathy in the hospital, sat down on our couch, bawled uncontrollably, looked at my husband and he said: “DO NOT tell me that now you think you have a brain tumor.”  I told him I didn’t think it was a tumor but that I knew, I just knew something was wrong with me, and then I said it out loud.  I said, “I just know something is wrong with my brain.” I wasn’t taking Cathy’s situation and dumping it onto myself.  But, it was a wake up call for me.  Well, the phone was ringing (incessantly).  I just chose not to answer it.

Days later, while visiting Cathy at home, I fell on the ground outside of her house. (I fell again later that evening, and once more on a later visit to Cathy’s). A group of friends were with me and thought it was a little odd. I didn’t trip or step on something to cause the fall.  I was just walking along, my legs wobbled, and down I went.  After the visit, I was talking with my friend A.J. Czerwinski about Cathy, about me falling down, and my worries about my own health came up.  Cathy, too, thought she had suffered from Panic Disorder, but was wondering if it was really just early symptoms of the tumor instead. Since I was never truly convinced that I had DSM-diagnosable Panic Disorder, A.J. urged me to ask my doctor for an MRI – just to ease my mind.  I told her I would and then promptly moved on to something else in my life.  If I had taken her advice, back in July, those two newest lesions may never have grown.  I may have caught my M.S. while it was still in the more benign stages—before the major symptoms ever reached a boiling point.  I could have begun treatments six months ago.  What was I thinking? 

Since my diagnosis, six people have approached me (one just yesterday) to say: “I have a lot of your symptoms.  Maybe I have M.S.”  First of all, I’m a doctoral candidate, but not for a medical doctor degree.  Sure, you may have M.S. and you may have something else that causes you to experience some of the symptoms I’ve discussed, or you may have nothing at all.  What’s important for those six people who voiced their concerns – and for anyone else reading this and relating to what I have written – is that you have something in the back of your mind, that feeling in your gut, telling you something isn’t right in Denmark.  Learn from my mistakes.  If you think something’s wrong with you, find out.  Don’t let anyone tell you that you’re making it up in your mind.  If your doctor won’t help you, find another one.  I never was completely honest with my docs, so I don’t fault them at all. Track your symptoms; chart them.  Keep seeking help until you find an answer.  If you truly think you may have M.S, you need an MRI.  No, a CAT scan or an X-Ray doesn’t diagnose it. Either do blood tests.  And, sometimes, you might even need a spinal tap.  It sounds scary, I know. Trust me. I can say that with sincerity.  But, honestly, life is much worse when you don’t know what’s wrong with you.

Frankly, I feel liberated now that I know I have M.S.  At least now I have a name to put with the silent and vocal symptoms.  I can validate that I really have been suffering for years and not just making things up in my mind.  And, now that I know what I have and the fear has started to subside, I can develop a plan for action.  I can treat it, deal with it, and hopefully live a full life.

For those six of you who approached me – you know who you are.  Go to the doctor.  Now.  Make that appointment.  I’ll be worried about you until you do.  If your gut is talking to you, listen. Answer the phone. Don’t send it to voicemail.  You know yourself and you know your body.  Celebrate my anniversary with me, by making a health pledge to yourself.  If you don’t want to celebrate with me, it’s that time of year for those resolution things.  Make one and this time keep it.  You’re worth it.