2nd opinion

God has been so good to take care of me. When we got the actual diagnosis, I knew I needed to get a second opinion, but did not have a plan for doing so. How do you go about finding a good neurologist? Why would you know? God was good, I did not have to do any searching. Though other people He did the work for me.

I had my second opinion today. Dr. Thomas Trese. When I looked him up on the internet, I found that he was 60 years old, a professor at Texas College of Osteopathic Medicine (TCOM), writes and presents. His office was not too impressive, unchanged since 1971 (furniture included). The only staff member was Nurse Bob. He rode up the elevator with me, though by looking at him you would have thought he walked up the three flights of stairs. We won't even mention the huge, crooked scrape on his forehead. But he was very nice.

When Dr. Trese came in, he did not look like the picture I saw on the internet, (which is a good thing). He was very kind. He asked lots of question. He listened. His questioning was very comprehensive. My wreck, has anything like this happened before, previous surgeries, etc. He spent a good 15-20 minutes talking to me. He ended by asking if there was anything else I thought I needed to share. He looked at my films. He did a visual test. He took me out to show me my films and show me exactly what he saw. His diagnosis was the same as Dr. Hall's. The location and shape of the lesions on my brain and spine combined with the symptoms that I have had are consistent with MS. He talked with me about medication options. Answered questions that I had. He was easy to talk to. He did not act like he was in any hurry. He spent as much time with me as I needed. I really liked him. He gave me good advice and information.

I am not sure who I want to use as my primary neurologist. I liked Dr Trese. He was very easy to talked to, I felt like he really listened, but he is in downtown Fort Worth and it is a beat down to get there. There is only him in his practice. Dr. Hall has a wonderful staff, location wise he is close, he has been kind and though not as easy to talk to as Dr Trese, still communicates well. I have an appointment with Dr Benjamin Greenberg at UT Southwestern on Dec 2. He is young, but has great credentials. I will go see him and see what I think.

I got my medication in the mail today. I am waiting on my auto injector to arrive and then I will schedule the nurse to come out and teach me how to do everything.

I am feeling good, physically and mentally. Even though I still have MS, God has been good today!

October Girls Newsletter

1. When Presley was two she scraped her knee. It was a strawberry, barely a scrape. She cried for an hour. The next day she could not walk. She could not even lean down by her feet to retrieve a book. She was pitiful. Brad seriously asked if something might really be wrong. By the end of the evening she was dancing around and saying she was healed, it's a miracle. I should have known then, my drama queen, would cause me much grief and money! Fast forward to June of this year. She is now five. She has a mouth full of cavities. She must have inherited her father's teeth, because I have never had one cavity my entire life. There are two that must be filled, the other five can just be monitored. Based on previous experience, (see above), I had a bad feeling the dentist visit would not go well. I was not disappointed. They put the nose on for the gas and she totally freaked. The dentist suggested we go the anesthesiologist route and that if we chose that route we should fill ALL her cavities not just the two. I know most dentists do the drink that sedates them but not the dentist we go to. Our hygienist is a friend from church and she said she would go the anesthesiologist route instead the sedation drink route because it was safer. I have put it off for several months. I was hoping with time and the fact that she survived a major surgery would give her the courage to get her cavities filled like a normal person. We went in to get our teeth cleaned, she freaked. One of the two cavities has gotten larger. We have been flossing and brushing diligently. They said we did not need to wait much longer to get them taken care of. In June I think the total cost was going to be $2800. I am guessing that price has not changed. Brad is depressed.

2. About six weeks ago, I woke up with my right hand and arm numb. When the numbness started to travel down my torso and down my leg, I decided I should probably get it checked out. I was unable to get into my primary doctor. He sent me to the ER to get a CT scan. It came back normal. They gave me some steroids and sent me home. The numbness got a little better, but I was having temperature sensitivity issues that were not getting better. I called my primary doctor again. He sent me for a MRI of my neck and gave me a stronger steroid. It came back with a hyper intense signal unknown cause with several possible causes, most I cannot pronounce. So he sent me to see a neurologist. The neurologist sent me for a MRI of my brain. The neurologist went out of town for a week, so I had to wait 11 days before I got my results. When Brad and I went in to see him I was given the diagnosis I had expected, but not what I was hoping for... he diagnosed with Multiple Sclerosis (MS).

I have a cousin with MS. She is a year younger than me and was diagnosed 11 years ago. So I have some familiarity with this disease, but not much. It is an auto immune disease that affects your nerves. Basically the body produces antibodies that attack the fatty substance that protects the nerves. It affects everyone differently based on what nerves are attacked. A white lesion appears on a MRI showing the areas of your brain and/or spine that have been attacked. I have 4 in my brain and 1 on my spine. They think the one on my spine has caused the numbness on my right side. MS is something that is not curable. Most people have the relapse-remitting form of MS, which means they have flare ups of symptoms followed by periods of remission. I am hoping I fall in this category. The doctor feels like it has been detected early,which is good. The medication helps to prevent future lesions from forming. When detected early they have a good success. The bad news, EVERY choice of medication involves a needle and side effects. The once a month IV option runs a higher risk of contracting a rare brain virus that they say is no longer fatal, but does really scramble your brain if you get it. Needless to say, we are not doing that option. The once a week shot makes you feel like you have the flu and about the time you start to feel better, it is time for another shot. I was advised to avoid this one. One you take every three days and another you take every other day, I am not sure I can remember every three days or every other, so those are out for the time being. The one I have chosen is the every day shot. Not looking forward to it, I should start sometime next week. All the people I have talked to are using this option and say other than some site injections issues, there are not other side effects.

I am going for a second opinion on Thursday with a doctor in Fort Worth and then a third opinion with a doctor at UT Southwestern on Dec 2. I know God is the Ultimate Healer and/or that the diagnosis could be wrong, but I have a feeling this diagnosis will not change. I am not sure how to explain it, but I have had the feeling that for sometime God has been preparing for an upcoming struggle/suffering, and I have felt like it would be something to do with my health. But God has been so good. He has taken such good care of me. Brad was with me when I got the news. Brad and I knew MS was a possibility, so we had prepared ourselves for this news. The very night I got the news, I was able to talk to my cousin. The next morning, I ran into a girl from church at preschool drop off and she asked how my appointment went. When I told her, she told me about another mom at the preschool who was diagnosed with MS just last year and hooked us up that afternoon. Her friend has a doctor at UT Southwestern and said she would email him to see if he would see me. The next morning, her doctor replied and said he would see me. I had the appointment that afternoon for December 2. At this clinic, you fill out a 16 page questionnaire, send in your films and then they contact you if they DECIDE to see you. So I feel so blessed that he agreed to see me at all. I got in, so many others do not! And the 16 page questionnaire, is very comprehensive. I feel good about getting to see him and hearing what he has to say! God has been so good to send people who have MS into my life to talk to and hear how they are doing and how they have handled this disease. It has kept my spirits in check. The people at Brad's work have been so sweet to him. Each one as they came into work the day after we got the news, came by to ask how it went. Because we did not want to look on the Internet, several of them searched for us and gave us some information that was helpful and not scary. His dad has a good friend whose good friend is a neurosurgeon in Fort Worth. His friend called in a favor and the neurosurgeon personally called me and set up an appointment with his colleague in Fort Worth that deals with MS patients. I am going on Thursday.

MS is a scary disease and I do have my times I am scared. Scared of the unknown. Scared I may be one of the ones who do not fall into the normal MS category. But most of the time I am doing good. I still deal with lingering issues caused by the damage to my nerves. Some days I notice them more than others. But I would say I feel pretty good. God has given me a full measure of His peace. I am getting to experience Him in an entirely new way. Daily dependence on Him has taken on a new meaning. When I am afraid I am trusting in Him. I know he has a plan for me and I am trusting in that plan. He is my provider, my sustainer. He is enough. God is good.

3. Because I do not want to end on a downer.......we are taking the girls to the most magical place on earth in a few weeks.... Disney World. I am getting so excited. Kennedy is three and growing up. When we booked the trip in February I was hoping she would be fun to take on this trip, but now I know she will be fun to take on this trip. Both girls are going to have so much fun. I cannot wait to enjoy this with them!!!!

Love to you all,

DeAnne

Now I know...

I have been feeling better. The numbness and sensitivity to temperature much better. Normal, not really. Hard to explain. It is not pain. It is tingling, a heaviness, a strain type of feeling that could be from my shoulder all the way down my right side or just in my hand and forearm or in my foot and lower leg. Now, it comes and goes. The side effects from the stereoids were jitteriness and sleeplessness. I stopped taking those last Wednesday. When I noticed some numbness return on Thursday, I was worried. But it went away. The white spots in my vision has become a problem since my first visit to the neurologist. Some days are worse than others. Looking at computer screens, tv's, sunlight, anything illuminated makes it worse. But today, that has been better.

I went to the doctor yesterday to hear the results of my second MRI. Brad went with me. I had been preparing myself. Brad said he had been preparing himself. The doctor showed us the MRI and the four white spots on my brain. My symptoms along with where the white spots are on my brain and my spine are enough to conclude that I have MS. I knew it was coming. I was not caught by surprise. Because there was only four spots, the doctor felt like we caught it early. Early detection means they have a better chance at halting the progress with drugs. He spent much of his time explaining the different drug options that were available. We asked a few questions. I did not feel rushed. He seemed very competent. I did feel comfortable with him. He told us to take some time to decide and make an appointment to come back in a week or so.

I did pretty good. I stayed calm during most of the appointment. My voice did get shaky and my eyes watery toward the end of the appointment. I think it is the unknown, the possibility of how bad it can get that is so scary. I do not want to look on the internet, that will just take me down paths that my mind does not need to travel down. Right now I am fine. I can live like this. But what path will this MS take in me? That is the question and there is no answer. The doctor says when you diagnosis MS early and begin the medication they experience much success in preventing the progression of MS.

I was able to talk to my cousin for a long time that night. She was diagnosed 11 years ago when she was 27. I have watched her. I know it has not been easy. But she is strong. She is a fighter. She does not feel sorry for herself. She does not complain. She deals with what she needs to deal with and she goes on about living life. I appreciate her example. I appreciate her encouragement. I appreciate her time. I appreciate her honesty.

Many people have been praying for me. None knew MS was a possibility. My standard response was prepared....."It is what I expected to hear, but not what I had hoped for, they have diagnosed me with MS." I knew I would be asked on Tuesday at preschool and I was. I ran into two fellow BSF leaders after I dropped off Kennedy. I gave them my prepared response. Julia quickly said, "One of the mom's in Addie's class last year was diagnosed with MS about this time last year. She found a doctor she really liked. I will call her when I leave here and find out who it is and see if you can talk to her." I did talk to her at pick up. God was so good to quickly send me a MS friend who could talk to me. My primary doctor was quick to call be back on Tuesday morning to talk to me about the doctor he referred me to and about getting a second opinion. It could have been a depressing day, if I would have chosen it to be. But I chose to get out, do my routine, be honest and God blessed me with encouragement and hope.

Brad offered to stay home from work and spend it with me. I told him I really appreciated it and that I thought I would be fine and would take a rain check for a day I was having a pity party. He went to work and each person as they came in asked how my appointment went. Every one was so kind and supportive. Because we were scared to look on the internet for information, two guys at work did some searching and found some good information that did not have any doom and gloom for us. It was an overview of MS, it's symptoms and the treatment options. It was good information and I appreciate them finding it for us so we did not have to see any of the other scary stuff out there.

Right now I am feeling good. After talking to my cousin and the girl from preschool, I am feeling lucky. This flare up, attack whatever you want to call it, is mild. If the medicine can keep it like this forever or for a long time, I can do this. Both people feel like the medicine has been helpful in keeping their MS from progressing. That is encouraging. I plan on getting a second opinion. I am working on finding a doctor. I do not know how long it will take to get into see another doctor. We will see.

This is what I know. God is good, all the time. All the time, God is good. Even in this, He has been good to me. I do not know what the future holds. I know that I can only deal with today. Today His grace has been sufficient. Tomorrow I will trust in Him, in His provision, in His care.

God is good

I went in for the MRI of my brain today. Last Wednesday, when I found out that I would have to wait over 10 days before I would know any results I was frustrated. But God has been so good to me. I have really been able to lay my fears and concerns at His feet. I know He is in control of every thing, every detail. He knows the number of hairs on my head. He has plans for me, plans to prosper and for my future. All things work together for the good of those who love the Lord. When I am afraid I can trust in Him. God has given me a full measure of His peace, comfort and sustainment during this long waiting period. I do not know what the results will be. I do not know what road I will be heading down. But I do know I can do all things through Christ! I can trust in Him. Today His grace is sufficient!!!!