My Story (MS) – 2013 In Review

It’s been a while since I posted on a personal blog.  Most of my posts have been on my work blog. 

This year has had a lot happen in it.  We got a new house in February which we love.  Both kids are now in school full time.  Our Church opened up a new auditorium.  I recently got a new car.  The kids also got their own computers for the first time.  We also had a freak ice storm which left us hunkered down in our house for 4-5 days.  This year has been really busy and crazy on all fronts. 

One of the most impactful item that happened though has been very recent. 

On December 12th, I had a strange issue with my left hand.  As I would type, it would freeze up.  Almost like a numb feeling going up halfway on my forearm.  It would only last a few seconds, I would pause and it would go back to normal, but I still had this odd sensation.  A few minutes later it would happen again. I told my friends sitting around me, and one of them commented that I was getting old.  I shrugged that comment off, although we had a good laugh.  It felt odd and different and not right – regardless of age. The morning of Friday, December 13th (go ahead, make your comments), my hand continued to have those sensations of lost of use/numbness.  It was like my hand would spasm, and I was trying to move my fingers, but nothing would happen.  Or it would be slow, and I would land on the 3 instead of the E on the keyboard.  Very annoying!  There was no pain. 

After lunch or so, I started having another issue.  My left leg had a numb sensation.  It was the entire leg from my ankle up to my hip.  It would only last a few seconds, like my hand, and then go away.  Five to ten minutes later it would come back.  After an hour or so of this, I decided it was time to go to the ER.  My major worry was that I might be having a stroke. I knew someone in my church Lifegroup that recently had a stroke and didn’t want to mess around.  On my way to the ER, the left side of my face lost feeling for about 15 minutes or so, and I started having on and off lightheadedness.  This happened about every 10-15 minutes and lasted only for a few seconds. 

At the ER, they took some blood and then had me get an MRI.  They came back and said the MRI was clear and it wasn’t a stoke.  They said they didn’t know what it was.  The symptoms are possible for a lot of different things and they referred me to a Neurologist to have a closer look.  They gave me the report – of which I could not even come close to understanding.  They didn’t really explain the details of it outside of saying that these will always find something and from what they could see there was nothing to worry about.  Here is what it said:

Several scattered periventricular and subcortical white matter T2 and FLAIR signal hyperintensities are demonstrated which are nonspecific however in this young patient, diagnostic considerations include a demyelinating process versus vasculitis versus Lyme disease with early-onset small vessel ischemic change also included in the differential.

Yeah…  I read that, and the only thing I really understood was “Lyme disease”, but the way it was worded it sounded like it wasn’t Lyme Disease.

Over the weekend, I started reading up on some stuff.  I know, that can be bad to do.  Another buddy of mine at work actually told me to stop reading and just wait to see the doctor.  A lot of people were commenting that it was probably just a pinched nerve.  I didn’t think so though.  I’ve never had one, but for the issues I was having there was no pain at all and I don’t know that a pinched nerve would account for the light headedness/dizzyness.  I had mentioned to my wife that the only thing I had come across that really seemed to match what I was feeling/encountering was Multiple Sclerosis (MS).

I’ve continued to have the issue with my left hand and my lightheadedness. Even up to today.  It’s on and off.  Some parts of the day are better than others.  The leg was only on the 13th along with my face.

I went to the Neurologist yesterday, December 30th.  The doctor had listened to my story and checked me out.  He said pretty quickly that it definitely wasn’t a pinched nerve and definitely brain related.  After that we had a look at the MRI and he looked over the notes. He showed me what he was looking at and there were some whiteish/grayish looking spots like the following (I tried finding them again, but it was difficult.  I hope these were really it – he pointed out a few, but went through it kinda quick):

image

image

He said these are what are referred to as flairs.  He said these are sometimes normal to see in older folks, but at my age it is a cause for concern and is usually an indication of MS.  He said that the symptoms also match that.  My heart sunk! The doctor walked me through it some more though – which I really appreciated.  He also went back to the notes that the ER provided.

Several scattered periventricular and subcortical white matter T2 and FLAIR signal hyperintensities are demonstrated which are nonspecific however in this young patient, diagnostic considerations include a demyelinating process versus vasculitis versus Lyme disease with early-onset small vessel ischemic change also included in the differential.

He called out FLAIR and demyelinating process as being MS.  After some of my own research, that is exactly what MS is. It happens because the immune system will attack the myelin which is a protective sheath that covers the nerves.  Hence demyelinating. 

So, the initial diagnosis is MS.  He indicated that there are some great ways to treat it now-a-days and can be managed.  Although there is no cure.  My head flooded with scenes of West Wing.  All of my knowledge of MS was really from that show, which is pretty awful. I was happy and afraid at the same time.  I was happy that I may actually have an answer to what is going on.  I was worried that they would just say we don’t know what it is and say to keep an eye on it. 

So, what’s next? More tests in the hope of confirming it.  I have to go in for what they call an EVOKE test.  This includes a Brainstem Auditory, Visual and Somatosensory test (Touch from what I understand). I think they are doing to do some more blood work also.  then later this month I have a lumbar puncture scheduled. Yay! I laughed at the instructions for the EVOKE.  It said I should arrive with my hair clean, dry and loose.  Yeah, that’s not a problem seeing as I shave my head.  From what I understand the lumbar puncture is really the hope of getting a positive confirmation of MS.

Outside of that, I don’t know what is ahead.  From what I’ve read, ever case of MS is unique, so anything can happen.  I know it happen over time.  I also know that this is not a life threatening disorder.  I will more than likely get setup on one of the available treatments and take it day by day with the help of my friends and family.  I also know that this is not going to effect just me. 

Besides myself, I know my wife will be the most impacted.  My kids right now won’t really understand it, but as they get older and symptoms start becoming more visible, they will see it first hand and it will effect them as well. As it is right now, I’m reminded every day since the 12th that something is wrong by way of my left hand and the dizziness.  But, it is more of an annoyance than anything.  Something that is frustrating. But, also something that people can’t see.  I’ve had numerous conversations with people where I felt the dizziness, but they didn’t notice.  I’ve only felt like I was going to fall over twice so far, so it is not something that I would consider major.  The doctor wanted to wait on any type of treatment until we get the tests done, or something else happens as it is minimal for right now and no pain is associated or anything that is preventing me from doing anything.  Otherwise he would have started me on something right away.

Also a lot of praying is going on.  I’ve really felt blessed in the feedback I’ve had from the people I’ve told so far.  Some are praying, some are just thinking of me, but I think all have offered support in whatever way they can give it.  In that, I am grateful.  I will keep praying as well and let God’s course take me where it is needed to go.  I know he has a plan, so for that I’m not angry.  I know he wouldn’t put something on my shoulders that he didn’t think I could handle, or my family could handle.  Right now we just have to wait.  I have a great employer who I know cares about the people that work there.  I’ve seen that with others around me that have suffered through illnesses and issues.  I’m also grateful that my job is one that I can work from home if I need to, and I’m sure there will be discussions in the future about what that means for me.  So, that is not a concern for me right now.  Also the insurance is not overly a concern as our coverage, while not the same it was a year ago, is still really great compared to most places. 

I will keep this blog updated with the latest is and what my journey is like going down this road.  Maybe someday it will help others understand what is ahead for them, or maybe it will help my children know what I was going through and when.  Either way, I wanted to get it down.

Thank you for your thoughts and prayers and for reading this! 

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5 thoughts on “My Story (MS) – 2013 In Review

  1. Wow! That’s a lot to take in! Here’s the “good” news, you got at least the initial diagnosis pretty early on. I know a few young people with MS who waited until their first flair up was really bad, and it had pretty severe permanent effects. Hopefully, you will be able to get some treatment that will keep it at bay, and won’t have too many lasting effects. I will say a prayer for you and for your family, as well as for the doctors who you are working with.

  2. It is indeed a tough situation but here’s hoping it turns out something benign and leaves you and your family unaffected and stronger. If early stage, check whether one can explore alternate medicine that is not harmful, with the doctor’s advise – that way, even if unproven, if something stops it in its tracks, great. Hope this is another case that you resolve with flying colors!

  3. Been an eventful couple months for you, sir. Sounds like you have a great support system of friends and family. You and your fam are in my thoughts, sir. Take care and if you need horrible puns for any reason, let me know. :)

  4. If you can, get additional life insurance now – before your MS dx is official. Once it’s official, you will not be eligible for Life or Disability insurance. Their “health questions” will make you ineligible if you have ever received an official MS diagnosis, even though MS is not terminal.

    Physicians and the medical community have their own version of a “medical reporting bureau” – similar to a consumer credit bureau. They report their patients’ diagnoses and insurance companies get that info from the medical bureaus.

    I hope your dx is swift and if it is MS, please don’t assume the worst. Everyone truly IS different.

    MSBluis
    PP for 20 years

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