Tysabri Infusion #7

This precious pup is Montana when he was about three months old, living with Linda and Jim, who were his puppy raisers.

I had my Tysabri at the new infusion center. I was there for 3-1/2 hours. First, either my new neurologist or the Tysabri people have added Tylenol and an antihistamine to the protocol. No one told me. I had taken a Zyrtec that morning and since it's an antihistamine and a once-a-day pill, they accepted it. They gave me a Tylenol, and then had to wait 45 minutes before they could begin TY administration. Now, I know to take one before coming in!

Since I was a new patient at the infusion center, there were a whole lot of screens to be filled in. Finally, the questions were asked and answered and the Tylenol was in my bloodstream. Gwen, my infusion nurse, got the IV in but then the vein blew. Second time, other arm, worked. So, after all that, there was still the hour of TY and the hour of normal saline, then 15 minutes of observation.

Arnie was able to take Montana for a long walk around the hospital grounds. Of course, when they returned, I still was waiting to be infused. We talked awhile, and I suggested that he go ahead and pick up the groceries we were going to get when we left there, take them home and put them up. Then, come back at 5:00, and surely I would be able to leave by then. That worked out okay, and saved us some time.

I'm all excited because Thursday we are going to NJ for Passover. Our son and grandson are flying in from CA to join in the celebration. Haven't seen them since Thanksgiving. My SIL has hired a caterer for the cocktail hour and for the Seder meal so that she can sit and enjoy the family instead of cooking for days like she did last year. She is a fantastic cook, but this will be much easier on her.

A friend of mine, Leigh Brill, has written a book titled A Dog Named Slugger that is due out next month. It is about her first service dog, and how he helped her get through graduate school. I can't wait to read it, and since she's in the book club I belong to, her's will be the next book we read and discuss. It is all very exciting for all of us at Saint Francis!

I hope everyone has a good week with lots and lots of sunshine and love.

Happiness is Helpful

My husband is off chemotherapy for three months. He had a brain MRI and a bone scan today. If those are clear, then we can both relax until June. We decided to celebrate his release from chemo by taking a trip to Newport News, VA. Friday was yucky, cold and raining. We, however, were in the War Museum so the weather didn't bother us much. We had a lovely meal at Cheeseburger in Paradise. Arnold doesn't drink, so he had a delicious lemonade with strawberries floating in it. I had a margarita. We both had burgers.

This was kind of funny. The manager of CIB ran over to us and said he noticed we had a service dog, He explained that they had just gotten Braille menues and wondered if either of us could read Braille. We explained that neither one of us was blind, and that I used Monty to help with my balance and things like that.

The next day we spent four hours at the Maritime Museum, seeing things we didn't see on our last visit there. We also took a long, slow walk on the hiking trails there. It was a marvelous day with 70 degree weather and lots of sunshine.

I begin my Tysabri infusions next week at the new place where Arnold gets his chemo.

Happiness definitely helps the mind and the spirit. Does it also help MS?

New Neurologist

I had an appointment Monday with my new neurologist. He seems nice, listened when I was talking, etc. I just have to get used to him, because I loved my old neuro so much and was so saddened to see him move across the state.

We went over my past MS history thoroughly. He did a complete neurological exam with the pin, tuning fork, finger-to-nose, and all the rest. I did the "drunk driving test" and only made it to my third step before I began to fall. He wants me to have an MRI sometime this spring, as it's been two years since my last MRI, and also because I started Tysabri last September. I told him that I also wanted to change my infusion center from where my old neuro was over to the one connected to the hospital, which is where my husband gets his chemo now and which is only five minutes from the house. He's already gotten the paperwork started on that. This neuro's office is right by the same hospital, so it's going to make things much more convenient.

We also talked about my tremors and if I thought the Klonopin was helping them. I told him I honestly don't think the med is helping, so he suggested I get off it slowly, decreasing it by 0.5 mg a week. I'm still to take it at night, as I take it for insomnia. It works great helping me to sleep the night through.

I had my 6th Tysabri infusion last Thursday. I had two good months, where both my tremors and my balance improved. However, three weeks after my 5th infusion they got worse and didn't improve this time. I know that Tysabri isn't supposed to be a miracle drug, that it's meant to keep your MS stable, but I was hoping that I would be one of the ones who got extra benefit from it. However, if it does just keep me stable I won't complain. Before Tysabri, while I was on Betaseron, my MS was going downhill so quickly that it was scaring me half to death.

The daffodils I planted this fall are up two inches! Now, that brought a big smile to my face!! :)

aha moment: coming out of my shell.

aha moment: coming out of my shell.

Fantastic Doctor

This is not an MS problem, but it ties in with yesterday's blog about good and bad doctors. By the way, the picture is looking toward Salem with the snow-covered Appalacian mountains in the background.

I have had numbness to the point of deadness in my little finger and ring finger and half the palm of my left hand for months now. Yesterday, I had an appointment with an orthopedic surgeon, and I was pleasantly surprised.

The building was huge, with lots of patients waiting, and 13 doctors in the practice. I figured it would take forever. However, I hadn't finished signing in when I was called back to the inner sanctum. Dr. Hagan walked in and introduced himself, asked if he could pet Monty, spoke to both myself and my husband in a pleasant manner, and was all-around very nice. He examined my hand, arm and elbow, then looked over the records my neuro had had sent over.

I was diagnosed with cubital ulnar nerve compression, which is going to need surgery to correct the problem. There are no guarantees that I will eventually regain the use of my two fingers, or the strength in my thumb (which was also affected), but I am not hesitating to have this surgery as soon as they can work me into the schedule.

Dr. Hagan will make a 3" incision over my elbow region, and adjust the nerve in the canal that it runs through where it is being compressed. He said it's possible that he will also have to do something (I forget this part) with the muscle that covers the nerve. The surgery will take about an hour, and it will be outpatient surgery, and I'll have to wear a splint on my arm for a week.

I'm hoping it's soon, because I want to get this over with and get fixed up. I'm having a very hard time typing, using only two fingers on my left hand when I'm used to using four. I also have a hard time gripping things, and drop things right and left. It's very frustrating. However, there is no pain--only the dead numbness.

The Good, the Bad, and the Ugly

I was thinking back to all the neurologists that I've seen through these past 20 years. I knew something was definitely wrong, when one morning I woke up to find the entire right-hand side of my body numb. I went to my regular doctor who said it probably was stress and gave me some pills. Finally, I got in to see my first neurologist. He wasn't a very nice man. He ended up yelling at me that a person couldn't have "that many things wrong" and I quit seeing him.

My next neurologist came highly recommended. He wanted to do a spinal tap, said he never used anything to numb the area. Like a dumb sheep, I went along with what he said. Well, he missed the first time and had to re-do it. By then, I was laying there sobbing. When he eventually told me that it wasn't MS, that it was all in my head and he had a friend who was a psychiatrist, I quit going to him.

I finally found an internist who was willing to sit and listen to me. He took one symptom at a time and worked with it. He followed me clinically, then sent me for an MRI which showed plaques. What a relief!

My last neurologist was an outstanding doctor and person. I saw him for three years. He diagnosed me as Secondary Progressive, and also agreed that I needed to begin Tysabri. Unfortunately, he moved to another part of the state the end of December.

I'm scheduled to see a new neurologist the first of March. I've heard good things about him, that he takes the time to sit and talk to you, and that he cares about his patients. I sure hope so! At least, all he'll have to do is pick up where my last one left off since I'm diagnosed and on treatment.

I've learned that I don't have to do what a doctor tells me, I don't have to take sh*t from a person just because he has an MD after his name, and I know my body a lot better than they do.

Falls and Tremors

Ring around the rosies.

Pockets full of posies.

Ashes, ashes

We all fall down!

I fell twice last week. At about one week before my last Tysabri infusion, which was last Thursday, my balance deteriorated and my tremors were out of control. When I was outside picking up after Montana, I fell. He was up on the deck and when I yelled for him to come and help me, he immediately ran to my side to help me up off the ground. What a super service dog! Luckily, I didn't hurt myself in either fall except for bruises.

My balance has since improved since the infusion, with no more falls. I had cut my Klonopin down to 1 mg at bedtime, but then began taking three pills a day because of the tremors. However, I don't know if it's the Tysabri or the Klonopin that is helping with my tremors. It may be both. I'm still not using my forearm crutch, just depending on Montana walking on my left for balance control.

The Tysabri infusion went well. I told the infusion nurse that I was having chills daily, sometimes waking up from sleep chilling. She told me that my hematocrit and hemoglobin were both a little low the last time, and that she would check the results of this week's blood test because I may be a little anemic, which I guess can cause chills.

Salem got at least 12 inches of snow Friday night and Saturday. We're paying our sweet neighbor to shovel the driveway. I was able to shovel half the ramp, the top of the deck leading to the stairs, as well as the stairs. It was exhausting, but luckily the snow was light and powdery. I kept thinking that must be the kind of snow that the skiers love.

I've never skied, but I used to to ice skate a lot in grade school and high school. I've been thinking about buying myself a pair of skates to hang on the wall as an incentive to maybe trying it again when the indoor rink opens back up in September. It certainly doesn't hurt to dream.