Appointment Made

Monday, 29 October, I am scheduled to meet a neurologist at Hershey Medical Center.

Cross-Roads

Different folks have asked me to update, but I've been in a state of limbo for a while now, with nothing definitive to report.

I did attempt to take the lyme test. Bowen sent a couple kits, asking that 1 vile be spun. Both times the cap popped off as the centrifuge was beginning to spin. My naturalpath doctor advised that I find out if my family doctor would take the results of this test seriously to even follow through with treatment before I request another kit and pay $250 to have it tested.

My family doctor said that he wasn't sure that he wanted to go that direction since the test is pretty controversial. He also suggested that I consider getting a 2nd opinion (I had been meaning to ask him about this very subject!) from Johns Hopkins, Hershey, or another local neurologist. In the Lord's providence, a name has been given to me of a young neurologist at Hershey Medical Center who sounds like he would really be open to pursuing diagnoses that have thus far been "ruled out." I am excited about getting a referral to see him soon & will update once I have seen him.

Another interesting side note is that I had to go for a nerve conduction study (in preparation for carpal tunnel surgery) at the neurosurgical office where I had been seeing my neurologist. But my neurologist is no longer there. I am unsure why his patients were not notified, but it seems that he is practicing locally, independent of the group where I had seen him. The senior partner at that office is taking the full load of my neurologist on top of those he already sees. I was due to schedule a 6 month visit with him this month. So I am wondering if I should just see the specialist at Hershey, and/or look up my neurologist, or what. I really do not know how this 2nd opinion stuff works. At this point, I guess I just want to hear what the doctor at Hershey says and go from there.

I am so excited -- I can now go on walks with the family!

Praise & Prayer Request

You may know that I slid down about 7 wooden steps (by accident) on my bottom 29 December, 2006. I still hurt a little from a bruised tailbone, but am able to report that I am now able to cope without pain relievers. Previously, I had been alternating quite regularly among Tylenol, ibuprofen, Advil, Aleve, etc, just to be able to sit down. I am so thankful that I have been able to drive since 3 January, since it is not possible for me to walk to meet Julia's kindergarten bus every day.

In regards to my mystery ailment, my naturalpath doctor is awaiting word from Bowen Research Institute because they have developed a very accurate blood test for lyme disease. It is so cutting edge, that their state has not yet granted them approval to conduct this blood test. When that occurs (probably within a couple weeks) my naturalpath will receive the kit, draw my blood, & submit it to Bowen. I am asking for your prayer because if high levels of lyme are found in my blood, I would have treatment available to me, which is more than I have now. I had done the more routine Lyme test last year without results, but as I said, this is much more accurate.

Summary

It looks like I have some disorder in the family of Hereditary Spastic Paraparesis. The main problem is that I experience soreness & fatigue with very little use of my legs. Boy, am I thankful for my handicapped parking placard! I also lose my balance very easily, in part because of the spasticity of my muscles & also because of my hyper-reflexia. Another symptom has been the sluggishness of throat muscles that are necessary in clear speech. Blood DNA tests have come back negative for the branches of this HSP which have treatment. This condition is degenerative, & all we can do is try to treat my symptoms, which have been getting progressively worse for at least 10 years. Nothing so far has helped, except knowing my physical limitations (not that I always get off my feet in time :D).

Thanks for your prayers and expressions of concern!

I'm OK.

MERRY CHRISTMAS!!!

What a wonderful time of year when so many freely speak of Emanuel, who came to reconcile sinful man to Himself!!

II Corinthians 4:6-11

God, who said, "Let light shine out of darkness,"made his light shine in our hearts to give us the light of the knowledge of the glory of God in the face of Christ. But we have this treasure in jars of clay to show that this all-surpassing power is from God and not from us. We are hard pressed on every side, but not crushed; perplexed, but not in despair; persecuted, but not abandoned; struck down, but not destroyed. We always carry around in our body the death of Jesus, so that the life of Jesus may also be revealed in our body. For we who are alive are always being given over to death for Jesus' sake, so that his life may be revealed in our mortal body.

I see the light at the end of the tunnel...

... with respect to this neuro-muscular metabolic investigation. The Parkinsons med (carbidopa/levo) did not help, so enough of that. I will have 2 DNA blood tests in about a week: Ceruloplasm & very long chain fatty acids. There is a low probability that either will show anything, but these are the 2 tests that could lead to some treatment, & these 2 are relatively inexpensive in comparison with other possible tests (which wouldn't even lead to treatment anyway!)

So, I am not saying we will have a diagnosis with these tests. I may, but even if I don't, that will probably be the end of persuing a diagnosis. I am just relieved that this road is almost at an end. My leg strength & balance is declining, but the Lord's grace is sufficient. Thank you all for your continued prayers.

Neurologist Report

A few more of my siblings & daughters proved to have normal reflexes, but that is not surprising since

1. recessive gene traits show up in only 1 of 4 &
2. this problem doesn't necessarily show up early in life.

Today I learned that the term "Inborn Error of Metabolism" applies to me. So far, these are my tests, their results, & what those results indicate:

1. 4 Spinal MRIs ~ normal ~ inconclusive, but not confirming MS
2. Nerve Conduction Study of lower legs ~ Axonal Neuropathy ~ abnormality
3. EMG on shin muscle ~ mild chronic denervation ~ this rules out MS

The next step is to try some med that is used on parkinson patients & also to price several types of blood DNA tests to see if I want to go that route. My doctor said it's hard to know what treatments there might be until an exact diagnosis is reached, but that may not be possible. Otherwise, only symptoms may be treated.

Oh well, I am coping, by God's grace. :D

I am NOT complaining ...

... actually, a little amused ... I'm just noticing how the Lord makes us anticipate glory. I now can name

1. Some neuro-muscular disorder
2. Hypoglycemia
3. Carpal Tunnel Syndrome &
4. Irritable Bowel Syndrome

on my list of chronic problems. I realize that many folks struggle with 1 or 2 of these, but it's all hit me within a few years. I guess it's true what they say about our bodies falling apart by age 40. ;-)

EDIT: My Christian cyber-friend Jennifer has the same list, except her #1 is rheumatoid arthritis. Pretty weird, huh?

EDIT # 2: I think the IBS diagnosis was made pretty hastily & am pretty sure I have no such thing. (See my 22 November, 2007, post.)

Many Sincere Thanks!

Having spent a wonderful time at the Carlisle ladies retreat, where Margy Tripp spoke on Relationships, I must express to all my Carlisle friends how much your concern & words of encouragement uplift me. It means a great deal to me to know that you pray often for me. I LOVE each of you!

Answered Prayer

I have been praying for my focus to be off myself & my problems. There's a fairly new older couple in our church -- he's in his 80's & she's battling the late stages of cancer. I am unable to do much for this couple, but just seeing them at church & praying for them has helped me to look outward.

A second answer to that prayer is that I have been studying a book (in preparation to co-lead our ladies' spring retreat -- very tiny) that I have been very excited about for at least 10 years: Encouragement ~ the Key to Caring by Larry Crabb & Dan Allender. I cannot recommend this book more highly to you than I do! One theme in the book is that I must totally rely on the Lord, especially when we have no human to lean on. The book really is helpful, particularly in identifying the difference between needs & desires: Need ~ my goal is to obey Christ in looking for ways to encourage others on in their walk with God; desire ~ I PRAY for God to send encouragement into my life -- I desire not to be lonely.

A third answer to this prayer is having friends who live in Izmir, Turkey, here in our town for the week. It is so invigorating to be excited about God's work in Turkey!

Misc. Thots

The Lord so simplified my day!! First, the rain meant that David could be home with the kids while I went to the neurologist, as well as a ladies' fellowship luncheon. Secondly, the afore-mentioned field trip is scheduled for next week, so I was able to take one of my daughters with me to the neurologist appointment.

My parents' & my daughter's reflexes are all normal. I was given a muscle relaxant prescription to improve symptoms. When I return again with my sister (which will probably prove fruitless as well), my neurologist will schedule my DNA blood test (which MAY confirm the genetic theory, though results are often inconclusive) & perhaps a spinal tap to rule out MS, which he does not suspect.

Let me explain something at this point. Even though the majority of my friends react with relief that I do not likely have MS, this is probably not good news. For 1 thing, MS is treatable; a genetic degenerative disease probably is not. For another, MS or not, my symptoms & struggles remain the same.

YAY!!!

My handicapped parking placard came in the mail Saturday, & I used it twice today already. Hey, every little bit helps.

Tomorrow's my parents' reflex test, so we'll see what we learn from that.... I had hoped to take my 1 daughter that seems the most like me in so many ways, but she has a field trip that won't get her back to the school in time. So I'll take her next time I have an appointment with the neurologist.

Update

My legs tire easily. I walk as little as possible. My family doctor signed an application to the dep't of transportation for me to get a temp. handicapped parking decal. I'm waiting for it to come in the mail. If I walk very slowly, I am alright.

The longer I lie in bed (when I collapse for the night), the more my legs hurt. Occasionally, I take a muscle relaxant; otherwise I toss & turn quite a bit.

Some members of my family (parents & siblings) see my neurologist 17 October to see if the hereditary theory can be confirmed by testing their reflexes. I'll let you know what happens then.

Thanks for your prayers & concern!

Just a Thot ...

Those motorized wheelchairs at Wall*Mart are looking awfully tempting ....

EDIT: My neurologist says to walk as much as possible to allow those muscles to keep working. So, I guess I'll keep using the shopping carts to steer & steady me. ;-)

Neurologist Report

Here's what my neurologist told me today:

I do have a disease of that part of the brain that controls the muscles. My MRIs (from my brain to my lower back) have all come back clean. This (& the lack of some symptoms) cause him to doubt that I have MS. He is more inclined to believe that my condition is genetic, probably of one of these 2 families of disorders ....

1) Leukodystrophy refers to a group of rare genetic disorders affecting the central and peripheral nervous systems. They are neurodegenerative diseases characterized by abnormalities in myelin, the fatty substance that surrounds, insulates, and facilitates the function of nerve cells.

But more likely is this group of disorders ....

2) Hereditary spastic paraparesis (HSP) is also called familial spastic paraparesis and Strumpell-Lorrain syndrome. The common feature of these syndromes is progressive, often severe, spasticity in the lower extremities.

The next step to eliminate MS would be a spinal tap. However, my neurologist doesn't want to put me through that if checking my relatives' reflexes would confirm the genetic theory. So members of my family are to make appointments with him.

Psalm 46:1 (1599 Geneva Bible)

God is our hope and strength, and help in troubles, ready to be found!

Thanks for the verse, Joan!

DEFINITIONS

Hyper-reflexia: a condition in which the deep tendon reflexes are exaggerated; overactivity of physiological reflexes (in other words, my body over-reacts to anything that unexpectedly touches me)

Spasticity: muscular hypertonicity with increased tendon reflexes (iow, my muscles are not able to relax)

Dystonia: literally, "abnormal muscle tone"; generic term used to describe a neurological movement disorder involving involuntary, sustained muscle contractions. Dystonia may affect muscles throughout the body (generalised), in certain parts of the body (segmental), or may be confined to particular muscles or muscle groups (focal).

EDIT: I learned from my neurologist that dystonia is actually the opposite of my problem.

Post Script

My natural-path doctor told me that it sounds like I may well have had a concussion. Since I did not see my doctor till 8 days after my tumble, it is understandable that he was unable to detect such. Anyhow, all's well that ends well. :)

Edit: My hyper-reflexia, dystonia, & spasticity are conditions that preexisted my tumble. In fact, that fall happened because of these problems.

31 August, 2006

I guess the tests went ok. I'm not sure if I'll know the results of them before my follow-up visit with my neurologist 9/12.The nerve conduction involved having my legs lightly shocked while monitor patches reported reaction time to a computer. The poor gal doing this test on me thought she was torturing me because of my involuntary jumpiness in reaction to the shocks. Also the pointy instrument she used was not conducive to my "relaxing" & "holding still" so she could get a clear reading. As a result, I had to be shocked more often till she could get that reading.I went from over-activity to a lot of inactivity. After an hour's wait, I had my MRI. In the waiting room I picked up the Gideon Bible & read the next Psalm I am on in my Xanga posts, Psalm 46. I read one of my beloved verses,

Be still & know that I am God.

Well, I was to be still in that MRI tube for about 50 minutes, & pondering what I had seen in the Privileged Planet DVD set <http://www.amazon.com/gp/product/B000COET9C/ref=nosim/002-9874645-6218434?n=130> helped me to know God's vastness. It was a long time to pray ... when my mind didn't wander. So the Lord reminded me that He was with me in those tests, too!

22 August, 2006

I saw the neurologist today. He confirmed that I do have a neurological condition; the question is "what?" He added the term "spasticity" to describe me (my over-reacting reflexes are not allowing my muscles to relax). He doubts it's MS but is not ruling it out yet. We are going to be systematically going through a battery of testing, starting with 1 more MRI on my neck & spine (the last 1 was lower spine -- "that doesn't count") & a nerve conduction test on my legs, both scheduled for 29 August. Then I need to do some pretty extensive blood tests, a spinal tap, & who knows what else. Thanks for your continued prayers!

P.S. I never told you what happened about the headaches. Once I had run out of the Tylenol with Codeine, the headaches resumed. So I am presently on a course of antibiotics & sinus stuff for sinusitus. Apparently the muscle strain combined with the sinusitus was the source of the unbearable pain. So, things are going well now. I haven't had to resort to headache relief for some time now!

5 August, 2006

Just an update for those of you who have been praying (& a HUGE "THANK YOU" to you!)

...This a.m. I did get my blood drawn, so we'll see what comes of that. Then I must've eaten my bag breakie (left-over humus ) in time cuz my blood-sugar seemed unaffected.

My family doc retrieved my MRI results [normal] from yesterday already. He had a migraine injection given to me, but after a 30 minute wait I was still in great pain, so he gave me a Tylenol+Codeine Rx, as well as 1 for a muscle relaxant for bed-time. The Tylenol 3 seems to be helping quite a bit(some pain, but present less consistently & much more bearable -- no tears!). Yay!!

I see a neurologist on the 22nd, so we will begin (Lord willing) to find out what does cause this hyper-reflexia & leg weakness since it's nothing that shows up in the MRI's.

3 August, 2006

Please continue to pray for me & for my family. They are trying to figure out the cause of my leg weakness & hyper-reflexia. It caused me to fall down our front steps Friday & so now I have a terrible case of whip-lash. I'm seeing a chiropractor, but right now have awful neck & head pain -- almost to the point of nausea! Agghh!

I go back to the chiro Friday afternoon. I have a spinal MRI Fri. a.m. (the brain MRI appeared normal) & fasting blood work Sat. a.m. I hope this fasting doesn't mess with my hypoglycemia. I am to take the MRI discs with me to my neurologist apt in Sep. My doc is checking for lime disease, thyroid (again), & wonders too if it might be MS.

The Lord knows...

12 July, 2006

I was called today & told that all appeared normal on the MRI. I guess I should be relieved, but just want to get to the bottom of this. I was praying for something definitive to show up. I have a follow-up visit with my family doctor, when I should get a referal to a neurologist. Thank you all for your prayers!

7 July, 2006

Last evening I attended a ladies' gathering with friends from the church where I used to live, 30 minutes from here. I felt so awkward, especially when carrying ceramic dessert plate & coffee mug down the brick steps from the kitchen to the patio. Most of these ladies have not seen me much for a number of years & have no idea what I am struggling with.On the drive home I just wanted to cry. But I was so encouraged by singing this Scripture song that, incidentally, I learned in my high school youth group with last night's hostess & her husband as my youth leaders. They taught us this song by Amy Killion. (The 2 verses from II Corinthians 12:9 & Isaiah 40:31 are normally sung separately, & then simultaneously. Obviously, I had to content myself with singing them separately.)

My grace is sufficient, is sufficient for you:
For my strength is made perfect in weakness.
My grace is sufficient, is sufficient for you:
For my strength is made perfect in weakness.
They that wait on the LORD shall renew their strength;
They shall mount up with wings like eagles;
They shall run, and not be weary; they'll walk, and not faint.
For my strength is made perfect in weakness.

6 July, 2006

I have an MRI on my brain scheduled for Monday. This was done 2 yrs ago, showing nothing, but I have been told I may be in the early stages of MS & so things don't always show up. Then we go from there. If I haven't mentioned before, my major problem is severe weakness in my legs. Comforting to know that the Lord knows the diagnosis, prognosis, etc!

You can find me ...

at www.xanga.com/bahiya

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