Lois & Clark Forums Forums General Discussion Off Topic First shot

I'm still keeping you in my prayers, James. This kind of thing can be terribly frightening, especially when you don't have any idea why it is happening.

Here's hoping the medical people will be able to figure out what is behind all this and do something more definitive about it.

Nan

You're a trooper, James! I had a mild chuckle that they've renamed the spinal tap. Mine knocked me off my feet for five days! Hang in there; next round of my liturgy of the hours has your name on it.

God bless,
JD

My best wishes are with you and your family!

Kathryn

James and Elizabeth you and the family are in my prayers.

Update 01-18-09

Ok, the good news, the sight in my right eye is improving slowly. I can see the four line of an eye chart. The colors on it are off in the right eye.

Basically, I am not seening the red end of the spectrum. I stop at yellow. Purples look like blue and red looks black. But only in my right eye. I can see color perfect in my left eye, which is my dominate one. I am confident that I will get the vision back, but not so sure about the colors.

The NMO still has a grip on my bladder, literally. I can urinate a little, but I still have to self cath, but it is getting easier, so I think the sphincter muscle is relaxing.

I am still on steroids, and will probably be so for at least a month.

We should know in Monday of Tuesday if the tenative diagnosis is the actual diagnosis. I would rather know that I have NMO than still be up in the air about things.

Keep praying for Elisabeth and the girls, as well as me.

James

Hi James!

This sounds like semi-positive news. I wish you and your family the best for a complete recovery and getting a diagnoses that helps to keep it in check.

Michael

Yes, it sounds as if you are improving, if slowly. I, too, hope that you will get an actual diagnosis, so that the doctors know what they should treat you for.

Ann

And I have something to tell HR...
James

From Elisabeth and myself.

Self first.
Eyesight slowly improving, getting so see something after yellow, but not full color retention yet.

Bladder still iffy

This is from Elisabeth.

Gems from the Journey

While this isn't the path that anyone would choose for themselves, I would be remiss if I didn't point out the blessings that I found along the way.

There was a great blessing in the way this was diagnosed. Seven years ago James and I took turns being terrified. We wondered if the loss of eyesight was permanent. James grieved the ability to watch his little girl grow up. We were so happy to test negative for M.S., content that this was just a one-time fluke.

Many cases of N.M.O. are misdiagnosed as M.S. and, therefore, are treated with the wrong medications during remission. We never travelled that journey. Furthermore, we weren't diagnosed until after we had witnessed that full recovery is possible.

The second time around wasn't nearly as frightening as the first. God withheld the diagnosis until the fullness of time when we were ready for it.

In addition, we know we've been spared from the worst of the disease. James experienced numbness, but no paralysis. He felt pain and tightness across his chest whereas it isn't uncommon for the muscles around the lungs to contract. God set boundaries around James health.

It hasn't escaped my notice that James was struck with the initial pain on a Sunday, a day of rest, followed by the manifestation of optic neuritis on the next Sunday. I truly believe this happened to rob us of not only our hope, but also our rest. Yet how can we fail to rest when God's peace is so pervasive?

Another gem comes from the effect on our marriage. I don't remember when the last time that James and I went out on a date. It wasn't during October or November when the fiscal year precludes that. It wasn't during December when we had houseguests and illness.

While a trip to the hospital isn't a romantic setting and while there are continual interuptions in the neurology ward, we had a day and a half where our only responsibility was to rest. We held hands, we talked, we went for walks, watched some of James' favorite T.V. shows, found humor in odd settings, and lived in ways we haven't lived for nine years.

Even at home, much of that hasn't gone away. You see, I have to sit at James' side because he is frequently unaware that his pain level is rising until it has gotten out of hand. It's a definite gem to just be together.

Another gem has been the outpouring of love from family and friends. I've had literally a hundred people offering to help in specific ways, in addition to prayer. Since I've only needed help from about seven people, it just goes to show how abundantly God meets our needs. He gives richly, above and beyond our wildest dreams.

In the same vein, He has reached out to us through His Word. The Bible study that I was supposed to finish on Wednesday (I freely confess I didn't get it done until now--Sunday) had me looking at II Peter 1:3. [His divine power has given us everything we need for life and godliness through our knowledge of him who called us by his own glory and goodness.] I'm not lacking anything right now.

The Bible study that I was supposed to finish on Thursday (I finished that one today, too) had me looking at Hebrews 4:13. [Nothing in all creation is hidden from God's sight.] While I know that contextually it is talking about something different, I also know that God knows every piece of James' inner workings. He has the ability to heal James completely, knowing every little thing that is wrong with his nerves. But if He doesn't, He also promises that His grace is sufficient.

In Community Bible Study, the leadership doesn't give presents to each other. Instead every year we draw names Secret-Santa-style. We pray that God will give us a verse to gift our recipient with. This year, the verse given to me by God and by Kathy was Ecclesiastes 7:14. [When times are good, be happy; but when times are bad, consider: God has made the one as well as the other. Therefore, a man cannot discover anything about his future.] This is such a fitting verse as we look out toward an uncertain future. God holds all of this in His hand; good and bad we can depend on the only One who knows the future.

He has met my personal needs. On Friday there was one worry that I had. I was unable to look up my schedule for tomorrow and I was afraid I was going to have to choose one daughter over the other. The previous Saturday was the first day of the Upward basketball season. RoseMary had a 9:30 game in gym 2, while Trinity had a 10:00 game in gym 1. Two kids/two parents; no problem.

My mother's heart was worried that last Saturday wouldn't be so easy. James couldn't go. I didn't know whether I should watch Trinity play, since I hadn't seen her play before or whether I should watch RoseMary cheer since I have made a commitment to be her assistant coach. I went through many different scenarios, but I couldn't come up with a solution I liked.

It was late when we came home on Friday night. I was pulled many different directions: preparing the kids for bed and laying out what they needed for the next day, unpacking the I.V. products the home health service had delivered to our door, trying to sort through the seemingly endless list of James' new medications... Finally, I was able to examine what the next day would hold. God had worked everything out in advance. RoseMary's squad was cheering for Trinity's team. God gives good gifts.

One of the greatest gifts He has given us has been a remission of greater than seven and a half years. More than 90% have their second attack in less than five years, but because God held back the disease we now have Trinity and Katelynn in our lives. All three kids have been weaned and potty-trained, giving me the opportunity to use my resources wherever they are needed.

Finally, James and I have discovered that we are capable of much more than we ever would have dreamed. On the one hand we were thrown into the deep end of the pool. On the other hand the future may (or may not) hold a lot of days of I.V.s and catheters, blindness and pain. Yet God truly does give His people strength. I thank God for modern medicine, but I know that my trust doesn't rest there. Those who live in the shelter of the Most High God will find rest in the shadow of the Almighty. We have found our rest.

Posting this here in case James is on but Elisabeth isn't... E - I sent you an email back that I could use a response on before I finish that .

That said...

You guys are still in my prayers.

God is so good isn't He? When we were going through everything last year with DS followed by DH, it never ceased to amaze me the little things that He helped take care of on my behalf. Like when I was at the end of my rope and ready to pull over to the side of the road and just cry because all four kids were crying or fighting or whatever, and suddenly silence would come over the van [except for the pouring rain]. And then I'd get to church wondering how I was going to get four kids and me in without all of us getting drenched and the rain would stop as we pulled into the parking lot and start again before I had them all in Sunday School. And through it all, he was taking care of both my men besides knowing when I just couldn't take any more.

I completely relate to the date thing and I'm glad that even if it wasn't a real 'date', you got to spend some good time together.

Carol

Elisabeth, that is one awesome testimony.

Praise God!

I'm so glad that through His grace, you can see so many beautiful positives in what is/has been a scary and difficult situation.

I'll keep praying for you and your family.


Corrina

James & Elizabeth,

I wish you all all the best. You are on my prayers as well as your children.

Elizabeth, I can't tell you how moved I was with your testimony. Sometimes, God does throw us tests in life and their purposes we don't understand at first, but rest assured there is at least one good thing to come out of it.

You both have been really so strong and positive about it that it makes me feel silly for whining about silly little things that happen in my life or the things I take for granted.

Staying healthy is the goal, yet you have achieved a lot more in the process.

May God pour his blessings upon your family.

MDL.

The only time I’ve ever been catherized was when I was under anesthesia and it came out before I was awake, so I don’t personally know how much ‘fun’ you are having. But I’ve put enough catheters in to know that they are not pleasant for the patient.


Oh, gee, what fun. But take heart in knowing that lots of people have to cath themselves.

Seeing as how you are pretty smart, I’m sure you will do just fine.

Grrr.... Yes. There needs to be major reform in the insurance industry. I worked in that industry for about 10 years and went from agreeing with a lot of what they did (like denying a 5 day stay in the hospital when all the patient had done was a proctoscopy [very minor procedure] - but that did NOT affect any money the patient had to put out) to thinking the business had lost touch with reality (like saying a woman having a hysterectomy could go home the same day). The last thing I did concerning insurance stuff was doing appeals for a hospital to all those insurance companies that denied payment. I found that they often denied payment for mammograms, MRI’s (with patient complaints of, for example, numbness), etc. Sometimes the insurance companies would demand a CT scan prior to paying for a MRI. That’s just stupid because the insurance company ends up having to pay a much bigger bill. Insurance companies are holding on for dear life because they see the future which will some sort of socialized medicine (which also has it’s problems).

BUT, again, take heart. Being at home means you are in a ‘cleaner’ environment (at least that’s true for most people) because hospitals are now known (perhaps in ‘inner circles’) as the worst place to get better. They are raging with staphylococcus aureus, a bug that developed (mutated) in hospitals. Staph aureus was resistant against many antibiotics. And as new antibiotics developed that will work against staph aures, staph aureus mutated further into things like the deadly methicillin-resistant staph aureus (MRSA) which is one of the ‘super’ bugs now out there. There are others such at Vancomycin resistant staph aureus (VRSA) and Vancomycin Resistant Entercoccus (VRE).

Part of this also occurs because antibiotics are often given for things caused by a virus - like the common cold. Antibiotics do not work against viruses and taking them for a virus can make a person resistant to antibiotics that they may later really need.

Okay, so I’ll quit ‘preaching’. James, I’m still praying for you, Elisabeth, RoseMary, Trinity, and Katelynn.


Keep at it and you’ll be better than the nurses! (Seriously, this is true....)

Yeah! Imagine the color ‘almost orange’ doing a little dance.

Everything you said, Elisabeth, was beautiful. Someone recently told me to try to find blessings in everything, and you have just reminded me of how important that is.

And wasn’t that one of the best gifts?

I wholeheartedly agree.

You have my continued prayers, James.

On a more material front, I was looking up this problem and found some interesting articles. I'm sure you have researched this a lot more thoroughly than I have, but this was one that I found that made me feel somewhat hopeful.

http://wiseyoung.wordpress.com/2008/12/18/devics-syndrome-close-to-a-cure/

Nan

Wow, thanks, Nan!

That helped a lot today.

Today was was a pretty bad day, pain wise. On Mayo Clinic Scale it was about 7.5.
See http://www.tipna.org/info/documents/ComparativePainScale.htm

I felt like I was trapped by the pain and couldn't get away from it. I finally went for a walk. It didn't get rid of the pain, but I was doing something besides pacing the house.

I am feeling better now, but it was a rough two hours or so.

Once the pain subsided a bit, I called the doctor and got the nurse. She said that she would put a message in that the doctor would see first thing in the morning, (along with all the other messages... I know how it works, and I am ok with that.

I really appreciate all the things you guys are praying and saying. It lifts my spirit to know that I have your support as well as all the people that I actually have living near me as well.

Online friends are not to be dismissed. They are important too.

James

James, I'm so sorry to hear that you have been in such pain. I hope your doctor will be able to help tomorrow. You've had so much to deal with over the last two years. I'll keep hoping for you.

carol

Knowing how it works still doesn't help much when you are in pain.


No they should not. I'm much closer to some online friends than real life friends.


All of you are still in my prayers. I've been thinking a lot about you James, and every time I do, I say a prayer. I even mentioned you to my mom and she has been praying for you, too.


Nancy

Thanks Nancy.

Have you any information on Myelin regeneration?

I know that Myelin does repair itself, slowly. The fact that the color my eyes could see were near normal by the end of the seven years proved that.

However, I was just doing some searches and there is some much that is hype and product placement.

I know that the some of the following is good, but is there other stuff as well?

Coenzyme Q10
Methylsulfonyl-methane (MSM)
Gama-linolenic Acid (GLA)
Omega-3 essetential Fatty acids
Garlic(Source of Sulfur)
Vit B Complexes
Choline & Inositol(Stimulates the Central Nervous System and protects the Myelin sheaths)
L-glycine
and
Glutathione

EDIT AT 09:42am

I just found out that one of the items I need to get within the next 24 hours, needs a prescription. They didn’t tell me that at the hospital. I asked what I would need to do to get the item and they said “go to a medical wholesaler.” They said nothing about a prescription! I think that that little detail is important for a patient to know!

James

From Elisabeth, since she is so good with words anyway....

James and I just got back from the neurologist's appointment. Unfortunately, we received the diagnosis we didn't want to get. James tested negative for both MS and for NMO. That means he's been diagnosed with an undefined autoimmune illness. On a practical basis that means that they don't know how to treat him. The drugs for MS treat weird T-Cells and the drugs for NMO treat weird b-cells. The doctor flipped a mental coin and chose to treat him in an MS-like manner for two months. After that he will go through all of the same diagnostic tests (without that fun lumbar puncture). If his condition either isn't improving or is getting worse they'll pick a different family of drugs to treat him with.

On Monday we're going back to the doctor so that James can learn how to give himself the appropriate shots.

By the way, he is now able to see red lights so he may be driving again. That means that all of his abilities have come back to the appropriate levels except for the one.

He's also trying a new pain medication. Almost all of the nerve pain is gone, so he's no longer taking the neurontin. However, he's still in a lot of pain. The latest theory is that his organs are spasming to cause the pain, so the new drug will address that. Yesterday and today his pain was moderate for most of the day. Then, within a five minute period of time, it shot up to the point that he was panting, unable to speak because he couldn't get his thoughts together and unable to make decisions for himself. Yesterday I wasn't home so he only ate half of a lunch because he couldn't figure out what goes with the sandwich that the girls had made for him despite the fact that the fridge was filled with options. He stayed at that level of pain for a few hours and then it went away as inexplicably as it came. It's obvious that he does better when I'm here to give him options on managing pain so I'm not going to leave for the whole day like that for awhile.

Thanks so much for your prayers.


Elisabeth

James, Elisabeth, I'm so very sorry y'all are going through all of this. Man is born to trouble just as sparks fly upward (a mangling of Ecclesiastes). I know that doesn't really help, but try to remember that you aren't going through this trial in a vacuum. There are other people around you who are supporting you. And - best of all - there is a Friend who will stick closer to both of you than a brother. He won't mind if you lean on Him.

Just remember, if it were easy, anybody could do it. And it wouldn't be a trial, it would be a breeze.