Saturday, January 23, 2016

Health Update #3: MRI and Lab Results and Next Steps

"Never be afraid to trust an unknown future to a known God." - Corrie Ten Boom
I have no diagnosis yet.

Well, according to my doctor, I am a medical mystery.

As you already know, my lab work came back "normal", which ruled out things like Lupus, RA, and some other things like that.  They also were able to show that I had no evidence of muscle degeneration, so that's good.  It leaves us with more questions than answers, but at least it's some progress.

My MRI results came back essentially normal, though we did see signs of old injuries to my lower back, evidence of my having broken my nose several times as a child (I had an astigmatism that took some time to find that resulted in me being a very clumsy child!), some results of aging or normal wear and tear on my back or possible early signs of degenerative disc disease, and evidence of issues that I've had with my back and neck for years (i.e. everything we already knew was wrong with my back and neck).  They found no evidence of tumors or blood clots or pinched nerves or demyelination or anything else that could explain my symptoms, hence the reason I was labeled a medical mystery for now.

In a nutshell, we've been able to prove no brain damage, nerve damage, tumors, blood clots or lesions, but not much else.

That all sounds great, so what's the fuss?

I am still having symptoms, and a "normal" MRI doesn't necessarily rule out things like Multiple Sclerosis, Myasthenia Gravis, Hashimoto's Encephalopathy or even a rare form of migraine (or something else entirely that we've yet to consider).  We've ruled out some things, but we've also not ruled *in* anything.  We've entered into "rare" and "unknown" or "non-typical presentation" or "early stages of ____" territory - depending on what we find next.  It doesn't mean I have something "serious", just that more testing is required.

So what are the next steps?

I am going to be seeing a neurologist whenever we can set up the appointment.  That could take a few months.  My doctor told me to expect more blood work, probably lumbar puncture and who knows what other types of tests once I see the neurologist.

In the mean time, he wants me to try Meloxicam and a cup of coffee when I have the weakness in my limbs (my main "scary" symptom) to see if it helps.  If it does, that gives me something to tell the neurologist as that is what I do to treat my migraines.  We'll see how that goes.

 What are your symptoms, anyway?

I guess it would be best to give a list.  I've had most of these symptoms for the last 6 or 7 months.

  1. Weakness in all limbs.  I've had weakness in both arms and both legs.  I've not had weakness in all limbs at once, generally it is just one, but I have had it in both legs at once or in my right arm and left leg, left arm and left leg, just one hand, etc.  This symptom normally last for 24 hours.  It had averaged about once a month, but I've had 3 bouts of weakness in the last 2 weeks in my left leg.  There is no pain with the weakness.  I can still bend the limb and have feeling in it, I just feel like it's useless or can't support me.  If it's in my leg, I have to pretty much drag my leg.  If it's in my arm, I may not be able to lift anything with that arm or grip anything well.  Sometimes I have half the strength of normal, sometimes less.  It varies.
  2.  Numbness and/or tingling.  This has happened in various places ranging from my limbs to my face, and generally occurs in my face.  It can last for a few minutes to a few weeks.  Just depends.  It's normally mild.
      
  3. Changes in taste and smell.  This is my newest symptom.  I have smelled things that smell like cigarette smoke, burning poptarts or electric fire smell when there are none of those things around.  Sometimes I taste something coppery or acidic or even something akin to pineapple.  I also have had a lack of taste or smell.  This has only been going on for a few weeks.
      
  4. Changes in hearing.  Sometimes I feel like it is harder to hear things or make them out clearly.  On Thursday, January 21st, I lost the hearing in my right ear for about 30 seconds, and now I feel like I have cotton in that ear.  It kinda feels numb.  I can still hear out of it, but it is slightly less than my left ear.  I had the doctor check my ear when I saw him on Friday, and he told me that I had no fluid on my ear, no wax build up, no sign of infection, etc.  There is no explanation for my hearing issue.
      
  5. IBS issues.  I've dealt with this off and on and normally attribute it to diet, but it definitely has gotten worse recently.  I have to be very careful with what I eat, as you all know, and it seems my system is more and more picky lately.
      
  6. Restless Leg Syndrome, night sweats, and/or other trouble sleeping.  These things are probably some of the more obnoxious symptoms for me.  It is frustrating to be exhausted and not be able to sleep due to twitching legs, feeling too hot or just can't sleep for whatever reason.  It is definitely not something I'd wish on anyone!
      
  7. Minor vision issues.  Every now and then, I'll have a moment when I have trouble reading something or seeing something clearly.  It normally doesn't last long, and I never lose all my ability to see.  I have had a few very brief periods of tunnel vision, but as I said, none of this has lasted more than a few moments at this point.
  8. Minor swallowing, chewing and/or talking issues.  Sometimes I have trouble swallowing larger bites or pills.  I always get them down, but sometimes it takes more time or effort.  I've had TMJ for years, but my jaws been popping more and I've had to be more careful with what I eat (i.e. not too chewy or tough).  I've also gotten laryngitis a few times not related to illness that can last anywhere from a few minutes to most of the day. 
      
  9. Dizziness/lightheadedness.  This normally only last moments to a few minutes, but it is out of the blue.  It isn't related to standing up too fast or bending over or even eating too much sugar or anything like that.  It is just random.  This symptom has been happening more often in the last few weeks.
      
  10. Lack of focus.  I have had this off and on for years, but it seems to be more pronounced in the last 6 months.  It is very hard to concentrate at times, and sometimes I can't understand things that have made perfect sense before.  I have to ask for things to be repeated or read the same things over and over again for them to click or I forget things unless I write them down right away.  I can forget how to spell simple words or even how to do simple math problems.  I can also lose my train of thought mid-sentence.  It can be a real frustration!
      
  11. Migraine or other types of pain, specifically in my joints.  I've had these for years, too, but I'll add them here as they have gotten worse in this time period.  I average a migraine about once every 6 weeks or so, sometimes more often, sometimes less.  I've had more joint pain in my left hand than anywhere else.  This is my "least often" symptom, I'd say.  The migraines are normally linked to hormone levels, but not always.
  12. Moodiness.  Sometimes I'll find myself upset or elated for no apparent reason.  I am always glad that I'm aware that my mood doesn't fit the situation and can normally get myself out of it, but not always.  I also find that I cry when I normally wouldn't.  I've never been an emotional person, so to feel emotional like that is uncomfortable for me. This was normally attributed to my Hashimoto's, but not always.
That's the gist of it.  I am more putting this list here for my own benefit than anything else.  I am very aware that there could be more than a few things going on with me and that some of things could be attributed to Fibromyalgia.  We'll see what the neurologist says.

Prayer Requests
  1.  Please pray wisdom as I see the neurologist and we decide next steps.  I'm not looking forward to more doctors and more tests, but I know it is necessary.  Pray that we know all the right questions to ask and get all the information we need to weigh all the options thoroughly.
  2. Please pray for my kiddos that they will not be scared.  Seeing Mommy deal with these things, especially the weakness, can be quite scary.  My 5 year old is having the hardest time with it all.
  3. Please pray for an accurate diagnosis and peace of mind.  It's hard to have your body fight against you like mine has been doing, and it is easy to get upset and angry.  I don't want to be that person.  I want to trust that God knows, and find a way to live my life in a way that is pleasing to Him.  I want to enjoy every day - even if it is a bad one physically.  I don't want to lose my smile, as it were.  I also would love for the doctors to be able to figure this out so that we can know how to proceed.  If we don't get any answers, well - pray that I'll learn to live with that. :)
Thank you for all the thoughts and prayers!  We appreciate them more than you know!  I'll post an update when I know when I'll see the neurologist and as I know more.

 

Monday, January 18, 2016

Health Update #2: MRIs Complete!

"Be still, and know that I am God:" Psalm 46:10a (KJV)

I chose this image because it fits so well how things went yesterday.  All of my fears God took care of and them some in regards to the MRIs and the trip to and from the appoinment.  It's an amazing story, and I just have to share.

Answered Prayer #1 - The Trip to the Hospital

On Friday, they announced that the weather for the weekend was looking quite grim.  They were predicting lots of snow (a foot or more) for our area, the majority of which was to fall on Sunday afternoon and evening.  I was devastated.  I have a hard time traveling in the winter to begin with, let alone when the weather is bad.  I'll admit it - the fear sunk in.  It griped my heart, and the more the snow fell, the worse I feared.

By Saturday evening, I knew that the weatherman's prediction would be true - we were getting snow, and a lot of it, on Sunday.  I was in tears I was so scared.  I begged and pleaded with God not to make me go to my appointment in nasty weather.  He reassured me by bringing the above verse to mind and Psalm 56:3 (KJV), "What time I am afraid, I will trust in thee."  It helped relax my heart, and I knew that - no matter what - things would be just as they should be.

Sunday morning, we woke up to blowing snow.  I'll admit, I was afraid, but God kept reminding me that everything would be ok; that He'd take care of me.  And you know what?  He did. :)

We had blizzard-like snow (windy and drifty and lots of white) from the time church started that morning until church ended with a few breaks in between, and then up until we hit the road, and then nothing.  Not a single flake of snow the ENTIRE trip to the hospital.  The roads were snow covered, but in very good condition considering, and we didn't do any slicking around (thanks to the good driving of my hubby, too, I'm sure :) ).  We got to the hospital in about 40 minutes (the trip takes 30 to 35 in good conditions, up to an hour in bad - we'd planned just over an hour), so I had about 30 minutes to relax, fill out paperwork, etc.  The first leg of the trip was over, and we'd made it there safely.  That was one prayer request answered, and I found myself praising the Lord for giving me that.

(I should mentioned that about 10 minutes into the trip to the hospital, I was overwhelmed with a sense of peace.  I felt you all praying for me, and God kept reminding me that He'd keep me safe and watch over me during the MRIs.  It was an amazing calm, and I can't thank you all enough for praying for me!)

 Answered Prayer #2 - The MRIs

My next prayer request had been that the MRIs would go well, especially the IV.  Well, I found out that indeed it was MRIs and not an MRI that I was having.  It was a series of 3, and each one would take at least 30 minutes to complete.  I was also told that I wouldn't have an IV, but I would have the contrast given as an injection directly into a vein, so kind of like a really quick IV that's not anchored.  I was also told that the MRI machine was a larger one, so not as confining, so it was a good one to have my first MRI in.  

I was also told, however, that the CD I brought to listen to I couldn't listen to because it would either 1) not work in the machine or 2) not work after they played it there due to the MRI machine and such.  I opted not to try playing it, as it is one of my favorites. :D  Instead, I had to choose a radio station.  I asked for classical, and that was a no go because they could only play an FM channel.  I then recalled a good Christian radio station and asked them if they could play that.  He thought they could, so we were going to try it.

I got onto the table, got my headphones on, and they started the first series of MRIs.  The radio station worked, and I did hear most of that vs. the whirling and banging on the machine.  I can even say that the most amazing thing about the whole experience is that, during the whole first MRI study, the message in song and preaching on the radio was about how you can trust God, how He is there, and how He'll never leave you and other variations on that theme.  I wanted to giggle, because I *knew* those songs and messages were for me.  I felt so special that God lead that radio station to play those things just for me (and yes, I believe that).  You really have no idea how awesome that was.

Anyway, the first 2 MRIs went off without a hitch.  I didn't have any issues with being in the tube (it was open on both ends, FYI, and not as tight as it could've been, and I found out that I am indeed *not* claustrophobic), and the noises didn't bother me a bit.  The bed I was on did get warm, but it felt good, and I also did feel like I was being vibrated to death, but all-in-all, I was fine.

 Answered Prayer #3 - The "IV"

After the first 2 MRIs, they allowed me to get up and use the restroom before starting the 3rd.  I'll admit, I started to get nervous because I knew the contrast was coming up.  God kept reminding me, though that I could trust Him, and that He'd not let me down so far.

I got back in the room, laid down on the bed and then they put this cage thing over my head (which really isn't as bad as it sounds - it's kinda this plastic, box-type thing that is more open than closed; kinda like looking though a catcher's mask made of large, rectangular plastic pieces).  They sent me back into the tube, telling me that in about 15 to 20 minutes they'd pull me out and do the contrast, right before they started up the radio and the test again.  Some of my favorite songs were being played this time, and I had to fight not to laugh.  God was making it so apparent He was there, I couldn't deny it if I wanted to.  It touched my heart on a level you just can't imagine.

About 15 to 20 minutes later, it was time for the pseudo-IV.  I was asked how my veins were, and I told him that they could be difficult, but I had made sure I was hydrated, so he shouldn't have too much trouble.  He looked at one arm, then the other and then asked me if they'd ever had to do IVs or blood draws out of my hands.  Oh, boy!  I knew that meant my veins weren't wanting to cooperate.  I told him yes, and sent up a quick prayer just begging God to let him find a vein the first time so I wouldn't have to get multiple pokes.  Sure enough, the guy decides to try looking at the first arm again, ties that tourniquet extra tight, and a vein decided to show itself!  Horrah! :)  He got the contrast in (which gives you a weird taste in your mouth that's hard to describe - kinda acid mixed with menthol) without a hitch, and I went back into the machine for about 10 more minutes and I was done and being told they should have my results in 2 to 3 days.

I felt like I'd been laying still a long time (I had), I was cold after being on such a nice warm bed, I felt a little shaky from the vibrations, and my head felt interesting - like I had a lot of coffee (I felt very awake - I am assuming a side effect from the contrast), but I was fine.  No problems, and only one stick!  I couldn't have been more thrilled. :)

I thanked the technician for only poking me once, and he kinda chuckled and said he always tried to do that.  The other tech told me he was being very modest, and that he was actually very good, and I told her I knew he was because he only had to poke me once.  

All in all, it was a good experience, and I will recommend them for sure to anyone needing to get an MRI that lives in our area.


Answered Prayer #4 - The Trip Home

It was time to head home after all of that, so we decided to stop and get something to eat (it took just over an hour and a half to do the MRIs).  The sky was dark, but not snowing, so we weren't too worried about traveling at that moment.

Well, once we got our food and were starting to eat, the blizzard-like snowing started again.  I looked at my husband and told him we really should head home as I knew that the worst of the winter weather was to be Sunday evening, and he agreed.  We quickly finished up eating, and headed to the car.

I kid not - not a mile down the road, the snow stopped.  Seriously!  We didn't have an ounce of snow from then on the entire way home!   The roads were even BETTER than they'd been on the way in!  I think it took around 35 minutes to get home.  It was amazing!  

After we got home, the snow started back up again, but we were able to get to the evening service at our church.  It's been snowing nearly non-stop ever since, and there was no school for most of northern and central lower Michigan (probably more than that, too), and I still can't get over how God stopped the snow for me.

Oh, you may think I'm exaggerating, but I am telling you - God took care of EVERY fear down to the last detail.  He can be trusted!  I am in awe that I mean so much to Him. :)

 A Prayer Request

I see my doctor on Friday, January 22nd, to discuss the results of the MRIs and lab work (all of my blood work came back "within normal").  Please pray that we will have *accurate* results, not "good" results.  I know that may sound strange, but sometimes we are asked to face the unknown and the scary for a reason beyond our comprehension.  We all go through hard things sometimes; I'm just glad that God will be there with me if now is my time to face those hard things. :)  

I don't fear "bad" results, though I'd rather they be "good".  Why don't I fear "bad" results?  Because God has already shown me that He will take care of me.  I want Him to use this for His will and His purpose - no matter what that may mean.  It's at times like this that this quote rings true the most to me:

"Never be afraid to trust an unknown future to a known God." - Corrie Ten Boom

I know God can choose to heal me or He could ask me to face something scary.  Either way, He'll be with me.  I am praying for grace and peace no matter what.

Thank you to all who have been praying for me!  Your thoughts and prayers mean so much!  I hope you have a great week, and I plan on posting an update this weekend (most likely Saturday) about my appointment with the doctor and my test results.


Saturday, January 9, 2016

Health Update

Our family Christmas photo for 2015
In my recent Monthly Milestones 2016 post, I mentioned about my health issues that I hoped to wait on seeing the doctor about.  Shortly after I posted that, I had an episode of weakness in my right leg that proved to me that I shouldn't put things off until summer.  That being said, I went to the doctor today, and he agreed that my symptoms were concerning.  They did a lot of blood work today, and, on Monday, I will be scheduling an MRI on my brain, C spine and LS spine to be done in the near future.  After that, I have to meet with the doctor again, discuss results and next steps.  We are in the "ruling out and in" portion of it all.  The biggest concern is the possibility of lesions on the brain and/or spinal cord at this point.

I have a couple of prayer requests surrounding this:
  1. For ease of testing and testing times that work best for our schedule.  I would love for the testing to go smoothly, especially anything related to needles. :)  I'd also love for the schedule to work out so that the kids wouldn't have to miss school, but if they do, please pray for understanding teachers and the ability to make up anything missed with ease.  Thanks!
     
  2. For accurate test results.  My test results have a history of being highly unreliable, so I'm praying that this will not be the case here.  I'd like them to find the issue, not wonder about it.
     
  3. For peace for me regardless of results.  I like to "know" things and I like to "prepare".  I get 10 steps ahead and can worry, and I don't want to do this.  God has a plan for my life and He knows exactly what will come of this, and I just want to rest in Him.  I will admit to being scared about this - it would be abnormal not to be - but I don't want fear to control me.  I want God's peace to rule.
     
  4. For peace for my family regardless of results.  I don't want my children to worry about their mom.  Pray that we know how to address whatever this is in the right way so there is no anger or fear for them.  I want want the same for my whole family.
     
  5. For wisdom and strength in knowing what to do next.  Pray for my husband and I as we talk about which tests to do or not do, if we should do medications or try a more natural route, etc.  Regardless of the results, it sounds like there will definitely be some changes and maybe even more testing in my future.

Thank you so much for your thoughts and prayers at this time!  I will keep you all updated as we learn more and walk down this new path. 


Update on 1-12-16: My MRIs are scheduled for Sunday, 1-17-16, at 2:45pm. They told me to plan on at least an hour and a half. They told me there will be no special prep involved, so that's a blessing. Thank you everyone for your prayers and thoughts! I will post an update when I have one. Also, there will be contrast for one of them, so pray that all goes smoothly with the IV, too. Thanks so much!

Update on 1-16-16: Tomorrow's the day!  Please be praying for a safe trip there and back (They are predicting quite a bit of snow tomorrow, and I'd rather not have to go there in a blizzard!), that testing goes smoothly (especially the IV!), and that we get ACCURATE results.  Thanks so much!  I am scheduled to meet with my doctor on Friday, January 22nd, to discuss results.  My blood work all came back "within normal", so we'll see how the MRIs turn out.  I'll post an update when I know more.

Saturday, January 2, 2016

Monthly Milestones 2016 {1}


Happy New Year!  Today is the first Monthly Milestones of 2016.  If you want to share a milestone post, just leave a comment below with a link to your milestone post, and I'll pop over and visit it and leave a comment, and hopefully some of my other readers will, too. :)  Normally, Monthly Milestones, where I will be giving you updates on how I am doing physically, mentally, etc., will go live on the first Saturday of every month, though sometimes I may be a day early or late depending on circumstances.

As you can see, I have a new look for this year.  I can't believe this will be the third year that I've been doing this!  Hopefully, this year will have more progress to show than just a few pounds lost overall.  As long as I go down vs. up, though, I won't be too upset if my progress stays slow.  Here's hoping my weight goes down this year in a bigger way! :)

Here is how I am doing as of today:
Me as of today, January 2, 2016, at 228 lbs.


  1. My weight went up a little!  I had hoped that my weight would be down again this month, but it's not. :( I'm up 2 pounds from last month.  I know it has to do with all the holiday food choices (I've had the gut ache, bloating and body pains to prove it), and I am working hard to get back to better eating choices now that the holidays are done.  Hopefully my weight will go down again starting this month so I have a weight loss to share the beginning of next month.  Overall, I can't complain, though, because I started off this journey in 2013 at 235, and I'm at 228 now.  Seven pounds lost is seven pounds lost. :) Hopefully I'll lose more this year, too. :)
      
  2. December was pretty full!   Between holiday travels, dealing with more illness, my sister having a baby, holiday festivity, finishing up school things before break, etc., I've not had the time to breathe let alone blog.  I've got a plan in place now, though, that should make blogging more possible, but I'm not sure that it will be more than once a month on here or Natural and Free.  I will try, though!
     
  3. We're still plugging away with our new lifestyle choices.  I haven't been able to walk as much as I'd like recently due to a lot of rain and then snow and cold, but I get out when I can.  We're also doing a lot more gluten-free cooking, too, though the last few weeks have been a bit off normal, as I mentioned above.  I'm finding that gluten-free helps me a lot, but I also have to watch sugar amount and grains as a whole.  Looks like I have another angle to approach as I go into this new year - less sugar and grains.  We'll see how it goes!
         
  4. I will be keeping an eye on the weird things my body does.  Well, I've decided that (for now) my random symptoms - muscle spasms (especially in my legs at night), dizziness/lightheadedness, joint pains, IBS, muscle weakness - can be watched and reported to the doctor at my next physical.  There is nothing that is consistent or severe enough to report just yet, though I will be keeping a close eye on things.  If anything becomes more consistent or concerning, I'll see the doctor sooner than my physical.  We shall see!

  5. Blog updates have begun!  As I mentioned before, I have a system in the works to make updates on this blog and Natural and Free more of a reality.  I can't promise more than once a month, but it's a start! :)     

That's about it for now.  How are you doing?  Are you reaching your goals?  Have you tried something new?  Come up with a new recipe?  I hope all is going well with you, and I hope you will leave a comment sharing your thoughts and/or milestones (with a link to your post, if you wish).  As always, I wish you the best of luck in all you do, and hope you will return soon! :)