Lois & Clark Forums Forums General Discussion Off Topic First shot

True enough, Terry.

They are going to start me on the syringe form of Avonex on Monday.

I keep telling myself, 52 times insteads of 365...

Hugs to both of you.

And prayers of course.

Not sure what we might be able to do, but if there's anything, let us know .

Carol

James,

I've been away from the boards for a while now and I was deeply saddened to come across this thread. I wish you and Elisabeth and your family all the best. You're all in my thoughts and prayers.

Please keep us posted as you can.

Sue

Hang in there, James. The last attack was in 2001. Once you get it under control, the next one might not be for years, or, if you take good care of yourself, and if God wills, never. Medical science is advancing all the time, and auto-immune diseases aren't the mystery they once were.

You're in my prayers.

Nan

From what you have said, you know more about than me. But now I need to do some research myself...


Ow, ow, ow, ow, ow....


Is the neurologist checking to see if something else is also going on when he is having this severe pain?


Absolutely. I don’t know what I’d do without him.


Have the two of you considered the Mayo Clinic or the Cleveland Clinic in that they may be able to come up with an exact diagnosis?


I continue to keep you in my prayers.

Just an update since it's been awhile.

James is down to his normal everyday pain levels.

It's very clear that he heals in his sleep. Every morning he wakes up and he can't see a thing. Then he puts his glasses on and realizes how much more he can see from the day before. His sense of smell and balance are completely back. The numbness is completely gone from his legs (although with today's cold weather he was wishing that his feet were still a little numb). The tightness across his chest and the pain in the skin of his back, abdomen and chest were the first symptoms to normalize.

Today's appointment was a complete waste of time. By the time the doctor saw us on Friday, his office was closed. Normally his staff does a lot of the details that Dr. Black needed to do for us. He asked us to return today so that James could learn how to give himself his own injections. He has been dreading it, knowing that intra-muscular shots are deep. When we got to the office we found out that the office staff doesn't teach anyone how to give their own shots. Instead it's the home health care staff that does the educating at a home visit. The only thing that we lacked was a form that needed to be filled out, so I filled in name, date, address, and phone number and went home.

The drug manufacturer is the one that sets up the home health appointments in this case. They called James to tell him that, while Blue Cross/Blue Shield normally does cover the drug, they still aren't sure which method of delivery our particular plan prefers. If they allow it to be purchased from a drug store we can start injections tomorrow. If it needs to be purchased directly from the manufacturer then it will take at least two or three days--so the dread is prolonged. The rep also mentioned that the injections hurt like heck. Thanks, so much.

Then we got the run-around at the durable medical equipment pharmacy. We were told when we went in on Saturday that we needed to wait until Monday so that the woman who deals with insurance companies could properly bill for it. Apparently the doctor filled out the prescription wrong because he didn't mention one detail and the lady was very upset with the man who let us purchase enough to get us through the weekend without proper paperwork. I have the feeling that heads will roll over that "huge" gaffe. Anyway we ended up going home $100 poorer with nothing to show for it for the next three or four days until our order arrives. Our primary form of exercise these days is doing the run-around.

Our current goal is to refine the drug cocktail James is taking. He's been off of the neurontin since Friday's visit--the only nerve pain he gets is from the pin-prick tests they give him. We never thought that the Oxybutinin was working, so with the doctors permission, he quit taking that yesterday. He'll probably quit taking the anti-spasmodic tomorrow, since we don't think that makes any difference either. There's another drug that we dropped that we added back into the mix. In a few days we're hoping that he will be down to only three or four drugs, plus OTC painkillers and the shots. He will be taking a ton of vitamins and supplements, though, for at least the next three months.

Hope that wasn't too much information for you. With all of the details that we have to manage I find that I review the schedule over and again. Normally, once I write things down I quit worrying about missing something important, but we have nine times every day that we take a break to do something for James' illness so even writing it down doesn't seem like enough.


Anyway, thanks for all of your prayers and support.


Elisabeth
PS Nancy, you might want to check out this website for your research: http://www.lef.org/protocols/neurological/multiple_sclerosis_01.htm Also, one of our favorite books is the Nutritional Guide to Natural Healing.

Oh, and one more thing, Dr. Black has been giving us excellent care--he's just not a good nurse or secretary. We really are in good hands, even if he can't give us a name for the illness.

Geez, that sounds so frustrating to be given the runaround again and again. Grrrr. I hope that everything gets settled soon and that the worry over the injections is worse than the actual event.

Keep your chin up, James (and Elisabeth!). You guys are thought of and loved from all corners of the world.

Perhaps it would be easier to have someone else give the injection. I consider myself somewhat of an expert at intra-muscular injections (I’d hope so since I’m a nurse.), but I don’t think I could give myself an ‘IM’. An injection that goes into the fat - a subcutaneous injection - yes, I can handle that and have done it in front of patients to show them it’s possible. Do you have a nurse friend at church that could give the injections. Can you do this Elisabeth?


Another reason for James not to do it himself. With an ‘IM’ you’d be more likely to tense up when doing it yourself - thus more pain. If someone else does it, James could close his eyes or look away and then be ‘surprised’, but even if he didn’t look away, I’ve heard most people say they’d rather have someone else give them an ‘IM’.


Try using an accountant ledger (those green things) or make one yourself. It may make things easier.


Thanks, Elisabeth. I guess I’ve become complacent over the years and haven’t done any new research. I think that’s mostly because I wanted to pretend MS would go away.


Anyway, I want both of you to know that you are in all my prayers. And I send you my love.

Sending you both my good wishes and thoughts. I'm so very sorry to hear things are still so frustrating. As for the "shot" issue...I'm not sure if this could help but I avoid them myself whenever possible. Not a fan of going to the doctor or needles, despite the fact that it is my life's career dream to become one, go figure right? I do know that there are such things as topical anasthetic creams which you (I think) can buy or order.

Anyway you just apply some of the cream for whatever time it tells you before the shot and voila, no pain. The cream is just very cold and eventually makes the place on your body where it was rubbed a little tingly feeling like when your foot as gone to sleep. Topicaine is the name of the one I have heard of. A thought.

Hug and take care,
Mona

Well, the topical would be fine if it was a subcutaneous shot that only was on the surface of the skin.

These shots are deep (about an inch plus) into the muscle. Pain is not avoidable....

Glad to hear you're starting to feel better, James. Sorry I didn't post sooner--just found this thread today.

I can only pray for you, that things will get better, James, and that is what I'm doing. Please continue to keep us updated.

Nan

Sorry to give you the absolutely wrong name for the book I use. It's really called Prescription for Nutritional Healing.

As for writing things down, we've been keeping track of meds and other stuff on an Excel spreadsheet. Since there are drugs he's been on for only a few days, so it seems like the best way to manage an ever-changing routine.

What I was talking about though when I said that writing things down didn't help was different. I often find that writing down the myriad of details in life is a stress-reliever for me. I'm happier if I don't have to mentally remember the grocery list, the itinerary for the next field trip, who is bringing what to the next family get-together, and so forth. With James' meds, I didn't get that normal relief when I wrote things down. At first it was like all of our lives rotated around James' illness. Things aren't like that now.

He's successfully off most of his drugs now. There are only two drugs he's on, both labeled "as needed." His injectables arrived today; he'll probably be trained how to use them on Monday. We still haven't decided if I'm giving him the injections or if he is. Honestly, I love him so much that the idea of causing him pain is odius. However, I know that love needs to be strong enough to give him what he needs as well as what he wants. We'll probably decide in the spur of the moment on Monday. Sometimes that's how we operate.

For the most part, we're doing okay. The majority of the pain is gone. What's left is managable. I think the arthritis hurts more than the other stuff. The only symptoms that are left are in the eye itself and in the S6 vertabral area.

On Wednesday James was cleared to drive, although it is in his best interests to limit driving to daylight hours in fair weather. An hour and a half later his laptop crashed, leaving him unable to work from home. Effectively, God booted him from the nest. In hindsight it was clearly time.

Because of the medical privacy laws, no one at James' work outside of his boss knew what was going on. Yesterday wasn't a fun day, since James had to tell the same story repeatedly. Each time he was greeted as if he'd been given the death penalty.

Honestly, life isn't that rough for us. Our medical expenses will only be about $2200 more than they we spent last year. At the risk of sounding rude, that's chump change compared to what other chronically ill people sometimes pay. He has a solid job with an understanding supervisor. He has a solid support network of people who pray for and with him, as well as meeting our physical needs. Bottom line? We're doing fine in spite of this interuption to life.


Elisabeth

Elisabeth, I'm so glad to read your last post. I understand about having to repeat the story over and over again, and because us lay people don't have the training or the experience to understand what James has been going through, it scares us.

And I understand about the "chump change" too. My wife's recent pacemaker operation (I still call it her "upgrade") was billed out at over $100,000 to the insurance companies. We've since found out that the hospital and doctors charge a premium for stuff like this, and then they settle with the insurance company for an amount one-half to one-third the billed amount to make the insurance company look good (because they saved the patient so much money, you see, and they saved their stockholders so much money too). We've had to pay a smidgen of that ourselves, but wow! Nothing like the amount they originally asked for.

And I'm so very glad that James has improved so much so quickly. I know it doesn't seem like it to y'all, but from a doctor's viewpoint it is pretty quick. And I rejoice with you that you two are bound together so well. The divorce rate for couples where one partner or one of the kids has a chronic, debilitating illness was over eighty percent the last time I checked. So y'all are setting the bar high in that regard also.

I pray that James will be well soon, that his computer will be back in action at full strength quickly, and that his symptoms will fade into the background. Failing that, I pray that you will rely on the One Who never fails, never upbraids, and never leaves. Bless you and your family.

From Elisabeth

James asked me to send out another prayer update today. He was running late for work this morning, but he wanted to keep everybody in the loop.

Yesterday he received his first dose of beta interferon. He still hasn't been trained on giving the injections, but since we had the drug and since he has a nurse on-campus at his work he was able to work things out. The side effects are just as bad as we were told they would be, although there was enough of a delay that he was able to drive home and eat supper before it became painful to move. He was joking last night that the good part was that his head hurt enough that he no longer noticed the pain in his groin. At the moment we are trying to figure out what the best schedule for his weekly flu will be. The good news is that the side effects wore off in about nine hours, so it shouldn't interfere with his work.

We're still seeing signs of improvement, although they are falling along the lines of "somewhat functional" and not to the point of the original "manufacturer's specifications". He would like for there to be more vision out of the corner of his eye and for a little bit more sensation to return to the bottom's of his feet, since he can't serve in the nursery if he doesn't know if he's stepping on people. But James is very pragmatic about limitations, seeing his abilities more than he sees his disabilities.

Our big prayer request at the moment is that God will give the physician's clarity to know whether or not his remission medications are working or whether he is just naturally healing. If the new drug works correctly, it will strengthen the blood/brain barrier (so far his brain has been unaffected) and change the T-cells which have been attacking his myelin sheath from inflammatory cells to anti-inflammatory cells. However, since we don't know whether he has any T-cells attacking his myelin sheath or whether it's related to weird B-cell activity (which I don't understand since my brain got over-full while the doctor was explaining both neurological disorders) or whether it's something completely different, at the moment we have no way of knowing whether or not this drug is doing anything beneficial.

Thank you for all of your prayers. It's as if God has carried us through this on eagle's wings.

James pointed out to a friend that Jesus said that when an illness isn't the result of somebody's sin, it comes into your life for the glory of God. We know that this isn't a lifestyle-related illness, so we are praying that God would be glorified someway, somehow, in all of this mess.


Thanks again for your prayers,


Elisabeth