More on the brain appointment

I am so glad that I am done with that neurological assessment.  I would rather them do something painful then to have to go through that again.  I started out with Dr. Morgan and he asked me some questions about my background, education, family life and work.  He told me that I have a very busy life already and that could very well have something to do with the problems that I am having.  I thought to myself, it really isn't that much different then a lot of other working mom's that I know. . .  He had me look at a drawing and copy it while looking at it.  Then he tested my hand dexterity to see how fast I could put little key shaped pegs in a puzzle with first my right hand and then my left.  Next he gave me a blank sheet of paper and told me to draw from memory what I just copied earlier.  "Oh boy, so this is how it is going to go."  I did the best I could, but got no feedback from the doctor.

Then he turned on a tape of a man saying numbers out loud.  I had to add the two numbers together in my head as he kept going and going and going.  I got through that OK, but then he started talking faster.  He told me if I got lost to just pause and jump in when I could.  I hate to say it, but I got lost quite a few times.  I began feeling frustrated.  He told me that this testing was going to push me to my limits and that no one that comes in is able to do everything 100%.  That put me at ease a little.

Dr. Morgan then informed me that he was hading me off to his assistant and he was going to work with me for the next 2 hours.  After that then I was going to take the MMPI (I believe that was the initials) which is a personality test at the very end.  He walked me over to another office down the hall.

The next man, I cant remember his name, had me look at some pictures and tell him what was missing.  The first few were very simple, but then they got harder.  I looked at a few of them and saw nothing missing.  I asked him, "Is this a trick question?"  The only feedback he ever gave me was to say no.  We got to the end of the book and he said, "That was a warm up so you know how things will go in here.  There are no trick puzzles or questions.  Things in the beginning of each exercise will be easy and then it will get harder at the end."  OK I thought so straight forward and no tricks!

I cant remember the order of things, but he had me do some drawing exercises after looking at a picture for a few seconds.  Then he would list off a bunch of words and have me repeat as much as I could back to him.  He did this 5 times in a row.  The worst part was he never said, "Yes, correct, good job."  He just sat stone faced looking at me so I couldn't even get a hint if I was correct or not.  Then he had me go back and draw the pictures that I drew an hour ago by memory.  WHAT!!  I did 3 that I could remember, but I had no idea what the 4th drawing was. 

Half way through I saw Kleenex on the desk and almost lost it.  I kept asking myself if I was getting these right or if I was completely blowing it?  I graduated from high school as well as college and now I cant remember a simple damn list of words.  The tears were bubbling up in my eyes and I told him that I had to go use the bathroom.  He said that was just fine to take breaks and told me where to go to find the restroom.  He told me to take my time and find my way back to his office.  I wondered if this was another test to remember where I was so I made note of how to get back without asking for help.  I collected myself in the bathroom and got back to his office.

We got right back into it.  He told me a few stories and told me to retell them to him using as many of the exact words that he did that I could remember.  He kept asking me, "Anything more?"  He said he was doing that so he made sure I got everything out that I could, but it was just irritating me because I had to say No.  More numbers, letters, drawings, definitions, questions, patterns, what comes next in a sequence.  Then he really dropped the bomb.  He said, "Now going back to the list that I repeated to you 5 times, tell me as many words as you can remember from that list." 

"Are you fu$#ing kidding me."  was the though in my head.  I did as many as I could.  Finally he handed me some blocks that had colors on them and I had to copy the puzzle that was on a card.  The first couple were easy, but the last one I couldn't get for the longest time so he just took them from me.  With my head pounding he finally said that we were done and I could start working on the MMPI test.  I was never so relieved to be done with something in my life.  The test was 350 true and false questions and was tedious.

I got in my car closed my eyes and wished to just go home and think about nothing.  I could feel the 'Brain Fog" coming on earlier then usual for me.  To bad it was Friday and traffic was terrible.

Now its the weekend and I am thankful for that.  Dr. Morgan told me that he would score everything and give the results to my neurologist.  I told him that my appointment with him wont be until the middle of July.  He told me I could call him later next week if I wanted to get the results earlier.  I will be doing that and update you.
 

Brain fog and tomorrow's appointment

Tomorrow is my “Brain” appointment.  My neurologist is concerned about my memory problems and we are trying to get to the bottom of what is happening.  He set me up with an MRI scan and this brain appointment at my last visit with him.  I called about the results from my MRI and was told there are minimal changes from my first scan that I had in 2009.  Then I was asked by a friend if I ever had my thyroid gland checked because that could cause some of the symptoms that I have been having.  I haven’t so I called into my doctor and had them check it.  It was a simple blood test and I had the results back the next day.  That came back normal as well.  I was going to cancel this next appointment if something showed up on the scan or with my thyroid, but since it didn’t I am going ahead with it.

“I feel like I have to remember more 

now for the both of us.”  

That was the response that Reuben gave me when I asked him if he turned off the television after we left the house the other day.  I find myself second guessing and verifying things more often now.  Before I start a story with someone I usually ask, “Have I told you this before?”  I have started putting reminders in my phone and setting an alarm to go off so that I will remember different things.  I have post-it notes in my car, my office and magnetic note pads on our fridge at home that I utilize often. 

I read an article on brain fog as it relates to MS patients.  It feels like you have this information in your brain somewhere, but you just can put it into words or remember the details of something.  I can feel my brain “Fogging” up when I get too warm, stressed or after a long day.  I don’t want to say that this happens when I get tired, because I am not tired as in I need to fall asleep.  If you see me in the late afternoon into the evening and I am staring off into space the brain fog has kicked in.  Some people mistake this as something is wrong or I am sleepy, but I just need to rest my body and my brain at this point.  My neurologist told me that I need to slow down and try not to do so much all the time.  This can be hard especially when the summer is so short and you want to make memories with your family and friends.  This is going to be a work in progress for me.  I like to be busy, but at the end of a busy day I can really feel the effects that it is having on me.

This appointment tomorrow is at the Minneapolis Clinic of Neurology in Golden Valley.  I have never been to this location before, but this is where the doctor is located that does the testing.  I have to be at my appointment at 11:15 AM and they told me that it will take around 4 hours!  They advised me to bring a lunch because it can be a long day.  I am not sure exactly what this test is going to involve.  They told me that they are trying to find out why my memory is failing me.  A shorter version of this test is often done to diagnose Alzheimer’s or dementia in patients.  My neurologist is going to try and figure out if this is a symptom of my MS or if something else is going on in this crazy body of mine that we might be able to reverse.  

Explaining the effects of MS to kids

Children love to be outside.  I think my kids would spend all day out there if we could.  They can run free and not worry about making too much noise.  They can expend energy that I wish I still had as an adult, an adult living with MS that causes fatigue.  Ayden got a new bike recently and he love riding it around our cul-de-sac.  He loves throwing the ball around with either his dad or me, playing basketball, T-ball or helping Reuben cut the grass with his toy lawn mower.  Makayla’s favorite thing to do is play with sidewalk chalk.  She can sit there for a while and be in her own little world drawing on the ground.  She especially loves it when the other kids in the neighborhood come over.  She gives them hugs and shares her chalk.  Makayla also likes to play sports with her brother, even if she swings with the bat upside down.

That is why the conversation that we had with my son last night was so hard.  The weather is getting hot and he wanted to go outside when we got home from work and picked them up from daycare.  This was how the conversation went. .

Reuben:           “Ayden we can’t always go outside when we get home from daycare.  Mommy has MS and when it is too hot out she gets sick from the heat.  So if Daddy is busy and it is to hot outside then we won’t be able to play out there because you don’t want Mommy to get sick do you?” 

Ayden:             “Yes!”

Reuben:           “No Ayden we don’t want Mommy to get sick and if she stays outside and gets to hot then she will get sick.  We don’t want that do we?”

Ayden:             “No, we don’t want that.”

Reuben:           “OK, so you understand that if Daddy is busy and it is too warm to go outside then we need to play inside.  You are too young to be out there playing by yourself, OK.”

Ayden:             “OK, but can I ride my bike today?”

A part of me wanted to cry, but this is my reality and I don’t want him to think that it is a bad thing that is going on.  I try to get outside with the kids as much as I can.  We are outside in the dead of winter with all our gear on as long as it isn’t too cold.  This can even be tricky at times.  Often I get too hot so I wear layers that are easy to shed off as I find myself getting warm. 

How do you tell your children that it is too hot to go outside?  How do you tell them, I understand it is sunny and blue skies and all your friends are outside playing, but we need to stay inside?  Kids understand the concept of it being too cold outside, but too warm. . . .  There is no such thing to a child.


 

Water is my friend during the hot weather months.  I found a fan that is connected to a water bottle that I keep filled with water and a few ice cubes when I know I am going to be outside.  Our house is also a fan of Popsicles.  I keep the freezer stocked in the summer because that way it cools me from the inside.  Both do a lot to keep me cool, but on some days nothing helps and I have to be stuck inside.


This morning I got the kiddos ready and we were heading out into the garage to get in the van to go to daycare.  I opened the door and the heat had already started.  Here is the conversation that occurred between Ayden and I. . .

Me:                  “Wow, it is hot out here already!”

Ayden:             “Mommy, are you going to get sick?”

I had to catch my breath when he asked me this.  My 4 year old little man understood what we were talking about yesterday on the way home. 

Me:                  I hugged him the biggest hug and said, “Oh buddy, it’s not too hot out right now so Mommy will be OK, I love you.”


When I left work it was warm out, but I could feel a little bit of a breeze.  I figured I better take advantage of today since the heat index will be in the 100's this weekend.  I picked the kids up and we played outside and stayed as cool as possible with water and Popsicles.  It doesn't get any better than this!!

Reflection

I had my phone on me all day on Friday waiting for the on-call neurologist to get back to me on the results from my MRI scan that I had last week.  Of course the second I am away from it he called!  He left me a message saying that there is minimal change from the last scan that I had done in 2009.  He said there is one spot, but he is sure that is due to technique (not sure what that means), but he finished with the best news that I have no active lesions.  My initial thought was. . .

YEAH!!!

Then I began to think about things.. . .

• This means the medicine is working, I should be happy about that, right? 
 
• This means that I will have to keep poking myself EVERYDAY for the rest of my life.  This I am not happy about.  
 
• I should be happy that there is treatment out there and this disease that I have is manageable, right?
 
• Should I do something about my hands going numb, since it isn't related to my MS, or just deal with it?
 
• Why am I not jumping up and down that I am healthy?
 
• Why is my memory failing me so much?  Is that in my head like the thought of falling down the stairs is?
 

This last week the Deisch's lost a very dear friend who was only 52 years old to a massive heart attack.  It made me realize that life is so short and I need to do everything that is possible to keep myself healthy so I can be here for a long time.  I will continue on this treatment and try to look at my injections as a blessing that I have this medicine so that I can stay healthy.

My neurologist does want to do another test on my brain to see what exactly is going on with my memory.  I was going to cancel it if something showed up in my MRI because then I would know what is causing it.  I am going to go ahead with this next test so we can figure out what is going on and hopefully try and reverse it.

In reflecting over the results since last Friday I have come to the conclusion that I am happy about the results and I am grateful that there is treatment available for me and it is working!