Emotions Before, During, and After a Diagnosis of Multiple Sclerosis

Patient Expert

When looking back on a situation, it is sometimes easier to process (and separate) the objective and subjective facts of that situation.   But when it comes to emotions, the intensity of feelings may diminish over time.   I have to remind myself of that whenever I think back and try to conjure and identify the emotions I may have felt during extraordinary times.

Today I am reexamining the emotions I felt before, during, and after I was diagnosed with MS.   In order to do this, I really can't just look at what was going on in 2005 (the year I was diagnosed) but before that.   One thing I will acknowledge upfront is that when one goes through the process of being diagnosed with multiple sclerosis, emotions can be all over the place.


The first time it was recommended that I get an MRI during graduate school, I really didn't think too much of it.   I don't remember being nervous or worried.   Maybe that's because I was young.   Just earlier this week, it occurred to me that maybe, just maybe I could get copies of my medical records from the university eye clinic during that period of time.   I'm supposed to get a call next week letting me know if they still exist in the warehouse almost 17 to 18 years later.   I'm curious to see what the real medical concerns were at that time.

Since I am extremely near-sighted, there has already been concern (and warnings) related to a thinned retina.   See any flashes of light?   Go to the ER immediately.   Suddenly lose vision or experience a shadow which covers your vision?   Seek immediate medical care.   Etc.   Folks whose vision is severely myopic need to be aware of the symptoms of a detached retina and react quickly.


One day I was noticing that my vision just didn't seem quite right.   Nothing specific, just odd enough that I visited my optometrist.   The next morning I woke up and it seemed that someone had spread vaseline over my glasses.   I was terrified and panicked!!   I just knew that my retina had detached and that I would need surgery or would lose my vision.   That Tuesday, I visited three specialists' offices and ended up with orders for bloodwork and an MRI from a neuroopthalmologist.   MS was mentioned as a possibility, as was a brain tumor or some other disorder.   I was scared, especially since my vision would continue to get worse before it would start to get better.


After it turned out that I didn't have lesions in the brain and my optic nerve was largely inflamed (but not directly damaged), I was relieved.   I didn't really know enough to be more worried than I was.   I understood that MS would be a possibility but it didn't seem that "I" would develop it.   Can anybody say "denial"?   I knew to be vigilant to new neurological symptoms affecting my legs as that might mean a diagnosis of neuromyelitis optica, a disease which looked to be absolutely horrendous based on what my mother found in medical journals.   I also knew that my risk of developing MS was increased for approximately five years and when I approached the end of those five years, I was relieved.


Well, I was relieved until circumstances had me back in an MRI machine.   At that point, the worry and concern began in earnest again.   The step-by-step process of fulfilling the criteria to finally receive the MS diagnosis seemed to take F.O.R.E.V.E.R.   In fact from the first visit where I mentioned new symptoms to when the neurologist assigned the official diagnosis, I had a multitude of visits to doctors, health professionals, and medical facilities.   This list includes: primary care visits - 2, total number of visits with the neurologist - 4, rounds of MRI scans - 3, blood draw/tests - 2, evoked potential tests - 3 in 1 day, lumbar puncture - 1, days of solumedrol infusion - 5, days of steroid taper (I forget), and number of months from 1st PCP visit to diagnosis - 5.   All of that would make anybody anxious for a firm diagnosis.


During the diagnosis process and beyond the time of the third MRI, the weakness and lack of control in my left hand/fingers increased.   I asked if there was anything we could do about it and intense occupational therapist was ordered.   The therapist was the first professional who acknowledged the seriousness of my symptoms in relationship to my career, interests, and livelihood.   As new neural pathways grew and I regained lost abilities, I saw the hope that disability was not permanent at least in the current situation.


Hope quickly turned to despair as the next relapse occurred only a few months later.   This MS roller coaster had definitely left the platform and was speeding down the track.   I cried a lot.   I was definitely depressed.


But as time went on and I learned more, I began to face the despair and depression more directly.   I was in counseling and my doctor increased my dose of antidepressants.   I began to relax and see that nothing was really permanent.   Situations are always in flux even if we don't see the change.   Sometimes the change lies within us, our attitudes, our outlooks, our emotions.

Not everybody experiences the same emotions which I recall feeling around the times that my MS journey developed.   I may feel similar emotions, but not quite so intensely, as I once did.   It gives me hope that I've learned to weather the challenges of MS which have presented themselves to date.   I have to know that I will always be able to handle whatever comes.   It may not always be easy, but I know that I'm stronger now than I was previously.   This gives me hope for myself and the future.