A Good Question

Have you ever been in a room full of people, when the question that was on your mind is expressed by someone else in the room, only to make you feel like you should have asked?  Lately, this is a common experience for me.  Probably because I am so busy trying to orient myself in the room and then distinguish what is being said, that by the time I form a question, someone else has asked. 
There is a reason that I started this blog with a question (aside from playing on the title) and not just any question.
I recently ran into someone from grade school and decided to become reacquainted.  We shared email information and after sending him an email that included a signature with one of my blogs as the "tagline" (thanks for that idea Stephanie) he asked about this blog.  He had a question that I think anyone that reads this blog may be wondering, so I decided to take the opportunity to answer it here.  Although I cannot remember the question verbatim, essentially he asked if I wanted this undiagnosed condition to be MS?  I understood how this blog may lead people to believe that is what I want.  So here is the answer that I gave him following his insightful question:
When a doctor first conveyed that my medical history suggested a possible MS diagnosis, I was relieved.  The relief was not to have MS per say but rather to be taken seriously.  For years, I have felt like I was going crazy, struggling with not feeling well but having tests coming back without results.  When my "symptoms" changed I did not want to go to the doctor because I was terrified of being judged as a hypochondriac or seen as wasting my doctor's time and yet this time he thought it could be something.  Once the feeling of relief passed and I thought about the enormity of a neurologically degenerative disease, I began to panic.  I like my brain the way it is and I still have a lot I would like to do with it.   Panic was followed with denial, believing that this would turn out like everything else in my medical history as just a scare, a benign test or a medical anomaly.
Then I was hit with realism: this is something.
So my answer, I want my health.  If I cannot have that then I just want answers.  I may talk a great deal about MS and that is because I have been pointed in that direction medically.  I am trying to be as prepared and educated as I can be.  I truly believe in proactive versus a reactive response.  Lastly, this experience has its own lessons for me to appreciate and learn from regardless of the end diagnosis.  I plan on reflecting on what this has meant to me and taking it forward in my career.  I consider myself lucky to have the opportunity to do that.

There is a date

I have an appointment for me MRI.  After a weekend of ups and downs it came as a shock and a relief that my appointment is only six days away.  The prospect of having results in as few as three weeks is positive and a little intimidating.
This weekend I had my convocation for my undergraduate degree and the build up to the day was fraught with vertigo and "funny feelings."  Admittedly knowing very little about anxiety and in no way diminshing its impact, I felt like the textbook for anxiety last week.  The days of anticipating my graduation were far worse than the actual day which was almost "symptom" free.
The day after convocation was a different story.  The vertigo was back with a vengence making me feel nauseous and weak. The buzzing had returned and before retiring for bed I experienced blurriness in my vision.  I started to wonder again how much of my experience was real and how much was psychosomatic.  I cannot shut off symptoms for one day, can I? (in saying that I hasten to delete it because I don't want to minimalize the reality of the other days of the week, it is a constant balance).
I try not to read anything about anxiety or MS right now because I am afraid of being easily influenced by the literature and possibly live the new "symptoms."  Conversely, I am acutely aware that I seem to acquire new "symptoms" weekly.  That cannot be normal for anxiety or MS, can it?

I think I give my mind and body more credit than either deserve and possibly it is a way that I am trying to assume more control over my situation.  After all it sucks to believe that you are not in control of your mind, your body or how either determine your health.
Today I am numb in my right nostril and the right side of my top lip.  It is so bizzare but I have been sticking my finger up my nose all day and yep it is numb.
It is also today that I decided that this has to be anxiety.  I am not sure whether I am prepared for it to be anything else and I am not sure that I am prepared to get answers.  Funny how just 3 days ago that was all I wanted and now that it is a looming reality, answers are the very thing that I am frightened of.  I feel like a walking contradication.  Isn't the mind a wonderful thing?

Who is Afraid of the Dark?

Last Wednesday evening I was sitting behind my computer working when I started to feel "different."  It began with an electric buzzing that moved up the back of my neck and stretched out over my scalp.  It wasn't painful but I could not will it to stop. The buzzing was not audible and I am sure that to the external eye I was not moving but I felt like a static vibration was jumping from one nerve to another.
By the time I was ready for bed the tingling was spreading like a web of electricity over the back of my head and through to my ears making them feel hot and itchy.  I was not fully over the virus in my eyes and so they felt heavy and dry as well creating a familiar sensation.  I began to panic and so I woke up Landy.

"I do not want to go to sleep, I feel funny and I am afraid that I will wake up the way I did a few weeks ago!"
To which Landy sleepily replied, "well you can't stay awake all night that will not help."
I realized that and a completely helpless feeling overcame me.  I am not in control.
"I have to do something, I cannot wake up like that again."

By now Landy had fallen back asleep.  I really wanted to be angry with him.  At the same time how could he possibly understand how I felt?  Some experiences are common to almost everyone like laughing, smiling and crying but vertigo, "buzzing" and tingling they are not everyones lived experience.  Landy is usually very sympathetic but to be fair that evening I had not conveyed how afraid I really was and he could not see what I was experiencing.
I decided to take a sleep aid (practical but not something I want to do on a regular basis) to ensure that I got some rest and was asleep within minutes.
Unfortunately I woke up with the same feeling in addition to vertigo.  FANTASTIC.  Most of the time I can function if the vertigo is minor, similar to the feeling you get when you have not slept in 24 hours.  That morning the vertigo felt more like I was walking on the deck of a ship in choppy water.  Still, I had so much work to do and I did not want to get behind, I decided to go to school.  Have I mentioned that I am trying to manage these symptoms while attending a Master's program?
I made it at school until 11am.  The vertigo, while sitting in class, transformed my head into a helium balloon.  I felt like I was watching the class from a higher vantage point and now the sensation beneath my feet was like walking on a cloud.  It is so weird to have to tell yourself that what you are feeling is not real and to try to ground your cognitive mind.  I spent the next 30 minutes in a school washroom trying to get my stomach to stop reacting to the vertigo in my head.  I needed to get home where I could lie down.
Driving is a challenge when you are not feeling well. I did not know how I was going to get home so I used my Blue Tooth to call Landy and asked him to talk to me while I drove.  I do not advocate being distracted while driving but in this situation I needed someone to help me remain calm for the next 20 minutes.
I only talked to Landy for about two minutes, it turned out I just needed a good cry.   

"I just want answers, I don't want to feel like this anymore.  If this is anxiety I want the medication that will make it stop!  I want them to call with my appointment for the MRI. I hate this!"
All Landy could say was "I know."

I got into my house just in time and would spend the rest of the day and night on the couch.  By the evening the feeling had subsided and I could go to bed with much less anxiety and fear.

I may not be afraid of the dark but like most people I have a fear of the unknown. I am beginning to feel anxious and want to start finding answers because there are a lot of questions.

When the opportunity arises

Source

I now know that back in September I did not have a stroke. It was my doctor who ultimately confirmed that my terrifying ocular episode was not the result of a stroke, but during those first frightful moments it was my knowledge of the warning signs for stroke that gave us a clue to what was NOT happening.
Last night I attended an amazing lecture by Dr. Jill Bolte Taylor, author of the book "My Stroke of Insight."  The discussion focused on neuroanatomy and the lessons Dr. Bolte Taylor learned about her own journey following a debilitating stroke.  She also outlined some key identifiers of a stroke, which if you have been reading my blog, you will recognize as alarming parallels to my experience.  Dr. Bolte Taylor used the clever acronym as follows:
S - Speech - inability or impairment of speech
T-Tingling of extremities
R-Remember - inability
O- Off balance
K- Killer headache
E-Eyes-vision problems

Are you seeing what I saw last night? At the time of that early morning scare I was suffering from three of the six stroke symptoms.
Why I confused my experience with a stroke is not the theme for this blog.  Actually, last night I realized that my knowledge of simple ways to identify a stroke helped to make a quick assessment of my health and possibly save my life.  Seeing as I have a blog and possibly a captive audience, I feel presented with the opportunity to pay it forward.  After all someone taught me what I know today and it did save my life in a manner of speaking.
At the top of this page you will see the three things to ask someone to do if you suspect that they are suffering from a stroke.
1. Ask them to smile ~ if someone is having a stoke they may only be able to lift one side of their mouth or you may see a pronounced paralysis on one side of their face.
2. Ask them to repeat a simple sentence like: "The black cat crossed the slippery street." Someone suffering from a stoke will have difficulty repeating or remembering the sentence.
3. Finally, ask them to raise their arms in front of them, if they cannot or their arms quickly begin to fall back down then they could be suffering from a stroke.
If you suspect someone is having a stroke every minute counts, get the person to the nearest emergency room or call an ambulance.
My journey to diagnosis is only beginning but when I needed it, the little knowledge I had helped us to assess the seriousness of a significant event in my health.  I hope I never have to make use of this quick assessment tool again, but I am glad to have it at my finger tips, just in case.

You have to be kidding me

It might not jump out right away but check out my right eye..

I am not sure where to even start this blog.  I am contemplating beginning in the middle and working my way out.  I think that is what I will try.
I find myself faced with a paradox.  As much as I would like to write this blog from an authentic place, I find myself struggling with reservations on how much I should express.  I acknowledge that I am influenced by the societal assumptions that suggest our personal struggles should remain personal.  Finally, I am unsure of how much to reveal with regard to my health struggles in fear of being stigmatized or judged in the wake of a diagnosis.  In addition to this paradox, I am constantly aware of my audience, who I may be affecting and how they may be affected.
Today I feel frustrated.  I am stifled by my ability to get caught up in my complexities and insecurities.  I  am overwhelmed by a weekend full of unfortunate circumstances and missed opportunites.  This blogs serves as a recollection of why this weekend frustrated me and yet it may be void of feelings.  I am working on that.
This weekend I received two phone calls from my local MRI department.  Unfortunately, I technically did not "receive" either phone call.  On Saturday I came home from work to find an unknown number on my call display, I did not have a voicemail message so I called the number back.  It led me to my local hospital where I asked for the diagnostic department (I am still waiting for my appointment from my referral).  I explained to the person who answered the phone that I had received a call from this number.  I was told that I had been called due to a cancellation but unfortunately the spot had been filled.  I tried to mask how deflated I felt and instead asked if I could leave my cell phone, in case the opportunity presented itself again.  The woman on the other end of the phone took both contact numbers down and told me I should have an appointment soon.  On Sunday we enjoyed Thanksgiving with our family and when we were heading home I saw that I had missed a call on my cell phone, again there was no voicemail and without call display I was not aware of who had called.  When I got home I checked my home phone and sure enough I had again missed a call from the MRI department of my local hospital.  Again, I called them back, hoping that the short time which had transpired since the missed call would be minute enough to produce an opportunity for the cancelled time slot.  I was disappointed again to find out that the spot was filled and the woman on the other end of the phone, recognizing my number, pointed out that she had indeed tried both numbers to no avail (thank you and noted).
That brings us to Monday.  A day designated to family fun and some school work.  It started off early with me jumping out of bed to get the family organized for an outing with friends.  Possibly the abrupt movements from sleep to wakefulness contributed to what would come next.  On the way to meeting our friends I begin to feel the vertigo settle into my brain.  The space between my ears began spinning with such a force that I believed I may be leaning to my right while standing upright.  It took all the energy I had to maintain a vertical position and focus forward.  I could feel the perspiration condensing between my shoulder blades.  My stomach was becoming nauseated and I spent the majority of our time out travelling back and forth to the washroom. 
Thankfully we were out with people who were aware of my health concerns.  I was so appreciative that my friend Sarah acknowledged my vertigo ande even suggested that no-one would judge me if I vomited in the bushes... realistically someone happening upon me would just think I had overindulged in festivities the night before. I like when people can see the humour in situations. Sarah was even able to locate some Gravol so that I did not have to suffer from the nauseous side effects of my vertigo.  It made it easier to excuse myself early, knowing that we had caring friends that understood.
The day continued to be frustrating.  My head felt like it was filled with helium, floating a mile above my body, not capable of too much movement or employment in thought.  Conversing, studying or reading was out of the question and I spent the majority of Monday sleeping or thinking about sleeping.

I am trying very hard to open my eye here

That brings me to today.  Totally unrelated to any MS symptoms, I woke up today with a swollen, heavy eye.  I acquired a headache throughout the day just trying to keep it open and not itch or rub it.  I did not wear makeup on my affected (not infected) eye and my friend Stephanie laughed at the Clockwork Orange esk contrast between my mascaraed eye and my naked one.  I realized with panic that along with any 'symptoms' MS may throw my way, I will also be challenged with the familiar colds, flu or general malaise that everyone suffers from.  Today that realization was just one more thing to acknowledge in a draining long weekend. 
Hope tomorrow "looks" better!

Pretty Feet

I have not written about how I have been feeling in this blog yet.
I have hesitated writing about the physicality of my experience and I intentionally did not start my blog with the "symptoms."  I have been very cautious because I do not want it interpreted as a form of self diagnosis or regarded as a proclaimation of MS related symptoms.  In saying this, it does not make sense to write a blog and omit what I am experiencing.
As in a previous blog I need to issue a disclaimer, I do not claim to be a medical professional and therefore cannot attribute my symptoms to any disease.  If someone is reading my blog because they are concerned about their health, it would be advised to seek medical attention.
It has almost been a year since I started feeling different.  I feel negligent saying that, however I did seek medical attention, unfortunately I did so believing that I knew what the problem was.  A year ago I went on birth control and it was just over a month later when I began feeling not well.  When I went to my doctor to tell him how I felt I attributed the sudden change in my health to the new medication.  The doctor did not see the correlation and still I wonder if my bias affected the type of testing that was done.
Whatever it is that I am experiencing began in November 2010 with me feeling extremely fatigued and achy and it seemed situated mostly in my legs.  The most common experience that I can think of comparing it to is the achiness that you feel the day before the flu or a bad cold hits.  That was how I felt every day for weeks.  I was exhausted climbing stairs or walking across campus.  My knees felt like they were on fire and from time to time (but not regularly) my foot would go numb or tingly (like pins were covering it).  These were the symptoms that I went to the doctor with. 
His first round of tests focused on Rheumatoid Arthritis and Lupus along with other disorders.  We met again after the tests came back negative and I told my doctor that I had been having vertigo more frequently (I commonly experience it a couple of times a year) and wondered if that could be related?  That was the first time that he mentioned MS testing but at the time I shrugged it off as an absurdity, still clinging to my theory of side effects from the drugs I was on.  The doctor referred me to an ENT doctor and also decided to placate me by taking me off of the drugs to see if the symptoms subsided, by this time it was March 2011. 
By May my lips, thumb and index finger were periodically going numb and my right foot would become incredibly itchy but I did not report this to any doctor, I figured it was all in my head.  Conversely, I was feeling "better," I was not fatigued after stopping the birth control and by the time I saw the ENT doctor in June my vertigo had subsided as well. Still, the doctor ordered the MRI and sent me to London for balance testing (it turned out that my balance was pretty bad for my age).  The results came back in August and the MRI showed Nonspecific Change (which I was told is nothing to worry about)  and my balance test showed some damage in my left inner ear that was old and which I had compensated for.  The ENT doctor dismissed me and told me that vertigo was probably just something that I would have throughout my life.
It was the end of August when I started to feel the fatigue come on again.  I chalked it up to stress.  I had just finished my undergrad, I was getting three boys ready to start school, I was preparing for my Masters and my husband was embarking on a new job.  It was no wonder that I was tired. I excused the fact that my feet were tingling more frequently as pyschological rather than physiological.
That brings us to today.  In honesty, anything that I have been feeling over the past couple of weeks I have been discrediting as psychosomatic due to my new knowledge of MS.  You may have noticed that I keep putting symptoms in quotations, that is intentional.  Yet, today I am exhausted, so tired that I could have slept the whole day away.  Not only exhausted, my left foot feels like it is bound too tightly so that it tingles in a painful way that makes me want to compensate by not putting pressure on it.  In fact, I loosened my shoes and cursed my bulky socks several times today.  Throughout the day I have completely lost sensation in my foot and just when I wonder if it has gone numb, I feel a prickling sensation crawl up from the sole of my foot, curling around to the top and continuing up into my ankle. It is hard to not think about the enormity of what is going on with these daily reminders.

I took my socks off tonight and looked at my feet.  I have always loved my feet and even thought that they are kind of pretty (for feet).  My vanity seems ironic in contrast to the way my feet have made me feel as of late.  They may look pretty but they feel anything but! 

Confusing the Patient

Question.  How many doctors does it take to confuse a patient?
Answer.  Just one.
I went for my bi-annual optometrist appointment yesterday.
During my meeting with my family doctor, earlier this week, I asked him if I should mention my recent experience with Optic Neuritis to the Optometrist and he felt that it couldn't hurt. 
Background Info: This is a new Optometrist to me, my previous one is retired, so I am going into this appointment with no knowledge of his personality or expectations about his abilities.

My appointment started as it should, with general information questions and then it moved into any concerns I may have before we started the exam.  I told the Optometrist that my doctor had diagnosed me with Optic Neuritis and I was wondering..... HOLD ON!  I did not get any further, the doctor asked me if I could see right now and then he said "I am positive that you do not have Optic Neuritis.  Why would your doctor tell you that?"  So I told this doctor what happened.  It is probably time to be more specific to the events of that day here too.  Here is the whole story:

Two weeks ago I was awoken suddenly at 5am in the morning.  I don't know why but I was definitely startled awake and when I opened my eyes they began moving rapidly up and down causing the whole room to appear in quadruplet (at least) and in a circular motion in front of me.  I could not get my eyes to stop moving and was instantly dizzy and nauseous.  I screamed for Landy to wake up because I had to be sick and I could not orient which way was up or down.  He tried to help me but I could only walk on a 45 degree angle because the ground felt like it was shifting below my feet. He ended up dragging me to the washroom. Once I had been sick and my eyes had stopped moving I opened up my eyes only to see through snow, similar to the picture below, (ignore the caption, I am not trying to self diagnose) the snow was only in one eye, my other eye was clear.

source

I was absolutely terrified that I was having a stroke and so I smiled for Landy but everything was normal (in a stroke the smile would be drooping).  I told Landy I was afraid that I may have had a seizure or possibly be suffering with an aneurysm, I was positive something was wrong.  Landy took me to the doctor and after relaying my story the doctor asked if this episode with my eyes had been followed by a headache or pain in my head?  The answer was no.

This is the information that I shared with the Optometrist before starting my exam.  I also told him that I was scheduled for a MS protocol MRI and asked if he had any thoughts if it could be something with my eyes instead or if he could see my optic nerve.  The doctor was very nice and he did a thorough exam.  He called the rapid eye movements, Nystagmus, and suggested that they had nothing to do with Optic Neuritis.  He said that my optic nerve was bright pink and tight which was indicative of a healthy nerve and that Optic Neuritis would result in a pale, limp nerve.  In his professional opinion, my description of the events sounded more like someone suffering from an ocular migraine.  He was not 100% sure of this diagnosis because if usually causes temporary blindness, does not stay in just one eye and does not result in nystagmus.
Of course my first doctor had mentioned a type of migraine that included rapid eye movement and severe vertigo, it is called a basilar migraine, but he ruled it out because I had not experienced any pain.
The Optometrist then suggested that this could come from an inner ear problem.  Of course I have already seen an otolaryngologist (ear, nose and throat doctor) and my original MRI ruled out any explanation due to inner ear damage.
So that brings us right back to the beginning.  My Optometrist believes that the best course of action is to get the MS protocol MRI because he believes that it could be neurological.  He is very interested to find out the results and even asked me to call his office and come right in if I have the eye disturbance again (he would like to see my eyes right after it happens).
As I left the office the Optometrist said to me "I think you are going to create a lot of confusion for the medical field before you get answers."  Story of my Life!