Eye issues and UT Southwestern

Last Wednesday I started having some pain in my left eye.  It has happened in the past one and off, but never lasted more than a few hours.  By Friday it was a constant pain whenever I would move, or rub, my left eye.  Saturday was the same.  I couldn’t do much at that point because my neurologist is only open Mon-Fri.  The pain wasn’t really bad.  Felt more like soreness than anything else.

On Sunday, it felt like it did on Wednesday and Today it really hasn’t surfaced too much. 

I went to the neurologist today because he said to get back to him if something lasted over 24 hours. In all of 5 minutes, he heard what I had to say and then indicated I should just go see an eye doctor.  He mentioned that if it is only pain related it wouldn’t be neurological.  He was interested more in blurriness or lack of vision if it was optic neuritis.  That’s fine. Would have been nice of him to clarify that a week ago.

He had mentioned something about stroke and I reminded him that I had had an MRI in the ER back in December, but that’s all that was done.  He was looking for those reports, and I reminded him I had those reports and when he saw them in conjunction with the MRI he jumped to MS.  I know they made copies, but apparently he didn’t have them.

As I was checking out, he came up indicating to maybe get a CT Scan for something to check blood vessels.  At that point I mentioned that I had been asked why I hadn’t done an MRI with contrast.  He asked if I was sure they didn’t do it with Contrast and I said yes (mainly because I know they didn’t give me any contrast, but also because it was clearly written on the report).  He casually said we could get one.  Almost like an afterthought.

/sigh.  Needless to say I’m not overly happy with this doctor. 

On a different subject, I got the initial questionnaire for UT Southwestern Medical Clinic.  It was 21 pages that I had to fill out.  Took about an hour and was very inclusive.  Covered a whole lot of things that my current neurologist didn’t even touch.  They indicated they had everything from my and would review the items and get back to me.  We’ll see.  I’ve heard it can take a long time to get in and it may not even happen.  For now, I’m just going to wait for that.

The Results… or not…

Last Monday I went back to the doctor to get the results from the Spinal Tap and blood work.  It was a fairly quick consult.  He indicated that the Spinal Fluid looked clean and basically the result is inconclusive as they can’t say what it is.

At that point he started backing off of what he had told me back in December.  After reviewing his notes from the MRI, he indicated that it didn’t like look anything to worry about with that.  Also that my symptoms could be from a lot of different things and could have even just been a migraine without any pain.  Although I’m suspicious of that being that I had lingering symptoms for a month.  Needless to say it left a bad taste in my mouth.  He ended it saying that we would really need to wait for another attack to occur before he would recommend any kind of treatment.  Which, to be fair, if we aren’t sure that it is MS, I would rather not impact my immune system which could lead to other problems and MS not be the issue. So, essentially we don’t know.  It could be MS or it may not be.  We just need to wait. This does kinda jive with several things that I’ve read indicating that typically a diagnosis won’t be made until two recorded attacks have happened.

One comment he made was that if he can’t tell me what it is, that is pretty good news, as opposed to him giving me a firm diagnosis.  I guess, but now I’m back to not knowing what happened and if it will happen again.

A friend at work has a neurologist for a wife.  They had offered to answer questions I may want to bounce off of them.  I typically try to avoid, or at least limit, it unless it was something pretty serious.  My gut was telling me to go get a second opinion, but I was worried that I would go through that just to have them tell me the same thing.  So, I bounced that question off of them. Would it be worth getting a second opinion? 

The answer was yes.  She had recommended getting a second opinion at an academic institution with an MS specialist.

I posted on thisisms.com to see if anyone could recommend someone.  That came back with the UT Southwestern MS Clinic, which is in Dallas.  Another friend at work also suggested the same, and that her husband goes there.  Sounds like a winner to me!  Although a bit of a drive from my house – 32 miles.  But, it sounds like that would be a better diagnosis. 

From what I was told, I’ll probably be put through some more tests.  So, now it is the waiting game again.

The Lumbar Puncture

This is a little late.  I had the Lumbar Puncture last Friday. 

I’ll have to admit, this one had me a little nervous.  Just the idea of someone sticking a needle in my spine got me worked up a bit.  I don’t generally have problems with needles.  I’ve done Allergy shots, have had blood drawn, etc. and have not had problems with that.

When I first got there, they took me into the Infusion room to get some blood drawn.  I’ve see these types of rooms on movies and what not, but this was the first time I saw one in person.  As my blood was being drawn, and older man came in with a walker for an infusion.  Based on the way he was walking, I’m assuming he had MS.  I guess the treatments are given this way.  I haven’t gotten to much into that.

After that, they brought me back into another area where the room was located.  Crystal and the kids came in with me. This was waiting for me in the room.

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The nurse then came in and let us know that the kids couldn’t stay, so Crystal took them to another room.  I had to change into a top piece and these awesome baggy blue shorts.  We didn’t get a pic of that though.  Crystal thought they were nice.

When the doc came in, he looked at the results from the EVOKE test I did the week before.  He just made a quick comment that they looked normal.  So, that’s good I guess.

I had to turn around with my legs going down the side of the bed and my back facing the doctor.  They had a table in front of me that was set up as high as it could go with two pillows on it.  I had to hunch over that.  He wanted me to get the lower part of my back hunched out. 

After putting on the brown/orange liquid stuff, he said he was going to put the numbing agent in.  He said I would feel a pinch and then a little burning. I felt the pinch.  Then he said he had to go in a little deeper.  Boy did I feel that.  Then I felt the burning around my waste and a little up my spin.  It wasn’t overly horrible.  More uncomfortable than anything else.

Then he said he was going to go in with the main needle.  He mentioned that my natural reflex will be to tighten and hunch more.  He said not to do that as it would close the hole and make it hard for him to get it.  When he went in, I really felt it at that point.  It’s very hard to describe.  It was a sharp pain that was like a hand gripping over my sides.  then it subsided.  He mentioned that it was in.  He filled the first vial and showed it to me.  It was a good size tube filed with clear liquid.  This was the spinal fluid.  He filled three of them.  He also indicated that clear is good.  If there was a yellowish tinge to it, that would indicated either meningitis or blood in the spinal cord which is not good. 

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After that he pulled it out and put a bandaid on and then said I could lie down.  He asked if I had any pain meds at home.  I told him I had advil.  He said he’d get me a prescription for something better – vicodin (aka the happy pills). They asked me to stay there for 30 minutes and said to stay hydrated. I went through two water bottles. 

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They later came in and said I could have gotten dressed.  Well, yeah you told me to lay down <g> .  When I got up to get changed, I felt fine.  I had a small headache but I think that was just from laying on the flat bed/board with the two pillows.  They said if I had an LB Migraine that it would really hurt.

We drove home and then I laid on the bed for a few hours after taking a vicodin (just in case).  From about 5 to 8pm or so.  Thank God for Netflix streaming! After that I felt find and just got up to go watch TV with Crystal.  I never had any problems.

The next morning, my lower back felt a little stiff and felt bruised, but other than that, nothing wrong.

They set me up for a follow up appointment on Monday, February 10th (three weeks).  This would be to review the results and discuss what is going on.  So, now I just wait.  Of note, next week I will be going up to Seattle to speak at a conference, so hopefully all will be well with that.

Until next time…

EVOKE Testing

Today I went in for what they called EVOKE testing.  This was three different tests.  They had to wire me up first.  The technician commented that I would be really easy to wire.

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The first test was the Somatosensory test.  If you look on my forearm, you can see little patches.  This is where they hooked up the electrodes and sent a pulse of electric in my arm.  They did the left arm first followed by the right.  The technician commented that this can take anywhere from 20-40 minutes.  The more I was relaxed, the faster it would go.

It didn’t hurt and didn’t feel like getting a shock. It felt more like someone thumping the inside of my hand and then I could feel the pulsing going up my middle finger.  It was cranked up until my hand started twitching.

Each arm took about 17 minutes for me.

After that was the auditory test.  They put a headphone on me and had to test each ear.  One ear would get a clicking noise which sounded like a loud woodpecker. The other ear would have static.  I was told to focus on the clicking noise.  The ear with the clicking was the one being tested.  I was told if I fall asleep that would be good.  I don’t know how anyone could fall asleep with that noise.  The lights were turned down for both the electric and auditory test, but I didn’t fall asleep.

Each ear took about 10 minutes.

After that, we went to the visual test.  It felt good to sit up after laying on my back for so long.

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There was a computer screen in front of me.  It had a bunch of white and black squares, like a chess board.  In the middle was a red dot. I had to focus on the dot.  This was done for both the left and right eye.

Each eye was pretty quick.  Maybe 5 minutes each.

After that I was given copies of the read outs, but no real interpretation.  The technician indicated that she didn’t know how to interpret it, but just looked for the peaks.  She mentioned that if there were no peaks, that was not a good thing.  But I had peaks.

I didn’t see the actual doctor in this visit.  No blood was taken either which I thought they would do.  That may be done on the 17th when they do the lumbar puncture.  For now, I will just have to wait a week and a half for the lumbar puncture.

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):

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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! 

Digital Signature gone wrong…

I was filling out an online form for a background check as part of my job.  This is the second time I’ve had to do it as they require re-checks – which I think is good!

One thing I noticed on the form that wasn’t there last year was an actual spot to sign your name with a mouse (as I didn’t have a pen device).  Kinda cool, so I decided to give it a try.

Five attempts yielded an utter failure at signing my name with a mouse.  It was worse than the pads at a grocery store.  At least there I have a pen to help me sign.  After so much frustration, I just decided to go this route:

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Meh!

Coming back home…

Back in December I had mentioned the fact that Microsoft and GE were doing a Joint Venture and I didn’t know at the time what that meant for me.  I’ve been working on the Health Support Team focusing on HealthVault since last August.

I had several options with regards to where I would go, but after some discussions, it was clear where I really belonged.  That is with SQL Support and working with the #SQLFamily

The Official start date is June 25th, but I’ve already been getting plugged back in.  I have posted a few more posts on http://blogs.msdn.com/psssql and I participated in SQL Rally in Dallas back in May.

I’m going to focus on SQL Business Intelligence.  Primarily, Reporting Services and Analysis Services.  Including Power View and PowerPivot along with SharePoint Integration.  There is a lot of cool stuff there and I feel that I can contribute a good amount.

I’m really looking forward to what is to come with these products and what Support can do to help the SQL Community and our customers!