Monday, December 19, 2011

And the Holding Pattern Continues...

Today, I went to Philadelphia to see my Jefferson neurologist and have 2 more tests done. However, due to personnel being unavailable, I was not able to have the EEG done. I was able to have the ENG (used to test if the inner ear is the culprit for causing dizziness) done, which was negative. Between that test and the ANSAR test and MRA I had done 2 weeks ago, my doctor was able to rule out more of the concerning diagnoses like MS and any other auto-immune disease, vasculitis, and aneurism or other vessel disorders.

At this point, my lesion on my brain appears to be non-active. There is a chance that we may not know what it is and will just need to monitor it every 6-9 months for changes. I will be having the EEG on Dec. 27 at 1 p.m. I now also need to have a fine motor function test done by a physical therapist to determine the extent that my tremors and fine motor skills are affecting my ability to function (in my opinion, this is more problematic to me now than the pain since the pain is now at a functional level). I also need to see a neuropsychologist for testing to see how different stressors affect my function since the tremors and fine motor issues are seeming to be exacerbated by outside pressure/stress.

Because of troublesome side effects from the Elavil that I am on to control the migraine pain, I am going to wean off of that and start on a different drug that doesn't have those side effects but can cause other potentially troublesome side effects. So I guess we'll have to figure out which one is the lesser of the 2 evils. If I keep this up, I will be able to open a pharmacy with all of the drugs that I have that I cannot take anymore! (that is, if it weren't illegal :-) )

So, no answers and more tests to come at this point for me. I have to admit that it is really starting to get discouraging. All I wanted for Christmas was a diagnoses, and now, I will not have one before the beginning of the new year. I really want to be normal again. I want to be the wife and mother that I need to be to my family. Poor Josh in his Asperger way just wants to know when I will be better since the unknown causes so much anxiety for him!

However, I have to remember that God is in all of this. Everything is happening in His timing for His purpose. I simply need to be patient and rest in His grace during this difficult time. The temptation to doubt is definitely growing in its intensity. I am reminded of Paul's resolve to firmly believe and live in God's all sufficient grace knowing that God's strength is made perfect in weakness (II Corinthians 12:7-10).

Thursday, December 8, 2011

In the Holding Pattern

Ok, so not much more to report on the headache front, unfortunately. I found out today, that I definitely do not have vasculitis based on my blood test results. My Depakote levels are low, but the neurologist wants to see them lower before I try a new medication, so I will have to wait it out for a little more than a week with the pain coming and going as it has been with the Elavil keeping it in check for the time being.

As for the ANSAR test I had done at the neurologist's office Tuesday night, all I know is that she definitely wants me to have the EEG done during my appointment on Dec. 19th and that at that appointment, she will discuss everything with me then. So, until then, we WAIT.

At a time when waiting seems to be all I do - waiting for a diagnosis, for the right medication, to be pain-free, to have my body back to normal, to have our household back in order and normal function, etc - I fervently cling to the promise of God for His wondrous strength to keep me going each day:

"But they who wait for the LORD shall renew their strength;
they shall mount up with wings like eagles;
they shall run and not be weary;
they shall walk and not faint."
(Isaiah 40:31 ESV)

In the meantime, in addition to waiting, I am doing my best to keep things running smoothly in our house and give the boys as much normalcy as my head and body will allow. After having our Christmas tree up for over a week, we were finally able to decorate it together as a family on Monday night. This put all of us in a festive spirit. When we put the boys to bed as soon as we finished, they chose David's favorite Christmas Carol as their lullaby. They sang it so nicely that Tim asked them to sing it for him to take a video. They were all too willing to perform and did an amazing job for an impromptu performance. Tim had a hard time not laughing at Josh's facial expressions, and I was just trying to keep the pain in my head at bay to keep the boys from thinking they needed to be quiet.

Wednesday, December 7, 2011

No Aneurism!

Today I found out that my MRA from yesterday was negative, so I do not have a brain aneurism, for which we are very thankful.  I have not received the results yet from my blood work I had done yesterday to check for vasculitis or the ANSAR test I had done last night to determine the functioning of my autonomic nervous system.  I hope that I can get some answers tomorrow once the neurologist has had time to review the results and call me.

Two days ago, my neurologist doubled the dose of the Elavil that I am on for the pain, and it has brought considerable relief.  I still have yet to be completely pain free for a day, but I am thankful for the longer breaks in pain where I have the unfamiliar feeling of being pain-free.  The drug increase has also decreased a lot of my neurological symptoms that were getting quite worrisome as they affected my ability to function.

Our church and neighbors have been providing us with meals which has been a huge blessing.  With the fatigue from the pain and the struggle with the neurological symptoms, it has become really difficult to take care of the boys, help with homework, and get dinner on the table at a reasonable time.  Not having to make meals every day has allowed me to spend more of my energy and time on my family, which has become especially important during this stressful time of my illness.

God continues to sustain us and carry us through each day.  I am so grateful for His perfect peace and His comfort.  My sister in law shared this video with me, which is so utterly perfect for what I am going through.  I thought I would share the richness of the message with you as well.

Thursday, December 1, 2011

Migraine Update

Today marks officially 1 month of having a migraine - definitely not something to brag about!  However, today was also significant in 2 other ways:  I found out that all but one of the Multiple Sclerosis results from my lumbar puncture last Monday are back and all negative (we are thankful for that; the other test result is more sensitive, but my neurosurgeon feels that in light of the others all being negative, there's really nothing to worry about),and I saw a Jefferson University Hospital neurologist (this is significant for this area because apparently, Jefferson has the best reputation when it comes to neurology).  We are thankful I was able to get in to see her, and we were really impressed with her knowledge and ability to look into all aspects of my case and piece everything together. 

I went into the appointment desperately praying that she would know what was wrong with me and know just how to fix things.  That did not happen because she admitted that she does not know for sure what it is, although she has a couple of ideas.  However, I feel she is my best shot of getting to the bottom of things because she is very aggressive in getting a diagnosis and is not content just trying to treat my pain.

So, the plan (as complicated as it's getting - sorry it's so long!):
1.  I need to get a MRA (Magnetic resonance angiography), which is a brain MRI done differently in order to study the arteriole system - One suspicion is that I have an aneurism. -- I was able to schedule this for Tuesday, Dec. 6 at 6:45a.m. (they want me to be the first person in because of my latex allergy).

2. Next week I will also get more blood work done, this time to have a more extensive work-up to make sure I don't have vasculitis. 

3.  I had stopped taking Depakote as of Sunday to see if the tremors I was having would go away or not since I first noticed the tremors when I was taking 1000mg of it.  The tremors have greatly lessened but are still present, and this neurologist thinks it may be another neurological symptom.  To be sure, I am to stay off of the Depakote and allow it to fully get out of my system.  My levels will be checked in my blood when I get my blood work done next week.  If I am clear, I will start on Lamictal, another strong anti-seizure medicine that has been successful in treating migraines.  To avoid drug interactions, I have to have Depakote completely out of my system.  This will mean, that my pain will progressively get worse as the Depakote leaves.  I have already begun to see this effect over the past few days, although the Elavil I am on is helping to prevent my pain from escalating to what it was before being hospitalized.

4.  I need to see a neuro-opthamologist to get my depth perception checked out, because it appears that my depth perception is not right which culminated in an accident this morning when I was walking down the stairs with Josh's uniform.  I thought I had just stepped off the last step, but actually had 2 more steps to go, so I fell down the stairs and sprained my ankle.

5.  The neurologist found weakness and diminished sensation in my left leg/foot which could be a result of the lesion on the right side of my brain.  My neurologist will do 3 more tests on me at my next visit (Dec. 20) to help her get a better picture of what is going on.  One of those 3 tests will be an EEG to make sure there is no connection with the 2 seizures I had back in 1999 when I was diagnosed with neurocardiogenic syncope and had the seizures after I had passed out both times.

As you can see, this neurologist is extremely thorough!  We are praying that within a few weeks time, we may finally have a diagnosis and a plan of action.  We remain confident that no matter what happens, God is in control and is working in through this whole situation for our good and for His glory!

Please continue to keep all of us in your prayers as my own condition weighs heavily on all of us.  Joshua is continuing to have a lot of anxiety over my situation which causes behavior issues at school and home.  As of today, he is going to have some medication adjustments to help him be able to function better in light of his Asperger's Syndrome.  We are also looking for a good child psychologist who might be able to help Joshua process his feelings better.  David is quiet in his reaction to this whole situation, which is easy for us to overlook, so we are trying to be better attentive to his needs.  Since he's becoming the artist of the family, we are trying to encourage him to express his feelings through art.  His health has been stable now for almost a month since his last infection of tonsillitis and pneumonia at the beginning of November.  His antibody transfusions continue to go well, and this week, he finally got to stop his prophylactic antibiotic with the hope that the transfusions have reached a sufficient level in his blood to help his body fight off infection.

We are so thankful that God's grace is sufficient even in these "thorns" in our family's lives.  His strength is what carries us through each day, and His peace keeps our hearts calm as we rest in His care.
We were so thankful that we were able to continue with our Thanksgiving plans and go to my parents' house.  My brother was kind enough to do our family portrait on my parents' property.