Monday, February 13, 2012

Update on our Trip to Little Rock

After a long and disappointing trip we are home from Little Rock. We were not expecting this appointment to be a walk in the park but on the other hand we were not expecting the obstacles thrown our way nor the out come that we got. My neurologist in Fayetteville made the referral the first part of November and so we have been waiting to get a second opinion for 3 months. Since the referral many of the neurological symptoms are better or have gone away. Some continue, others come and go and some are getting worse. Every day is a guess as to what we will see.

We left for Little Rock after church Sunday leaving the kids at home with friends. James and I were over half way to Little Rock when Kayla called to inform us that the nurse practitioner from the Neurology clinic called and canceled my appointment. Kayla told her that we were on our way to Little Rock. Evidently this did not register with the nurse or she just didn't care. The call came in as a private number and they did not leave us a way to contact them. We were not sure what to do and we are very upset that they had put Kayla in this position. We called UMAS and talked to the only person we could reach. The woman we spoke to said she was very surprised; that if they were going to cancel they would wait until the next day when they received word form the hospital. With the help of our only contact we made a decision to continue as planned. She gave us a list of numbers to call starting at 7:30 am. We had already paid for our hotel so we knew we would be out that money if we went home. Not to mention the time we took off of work and all the arrangements we had to make for the kids. We were committed to the process...we would have to wait and see how committed they were.

We arrived in Little Rock, found our hotel and then headed to find some dinner. We spent well over an hour and a half trying to find something open on a Sunday night. We kept finding places that were covered in iron bars with neon liquor signs. Not what we were looking for. We headed back to our hotel and ended up using an app that led us to a pizza place. They were open and ended up being 4 blocks from our hotel so we took the truck back and walked to dinner. By this time I just wanted to go to bed. I had not changed shoes from church so my feet were hurting, I did not have my coat so I was freezing and it was late so my blood sugar had crashed. While we were walking to dinner guys were trying to get us to buy things and there were several intoxicated men roaming the streets. At one point I pulled my phone out of my purse and put it in my pocket. If someone stole my purse I would at least have my phone. The pizza was good but it was a bar scene and super loud. James can assure you...I was in a lousy mood.

We really didn't sleep well. I was up at 5 and could not get back to sleep. Spent a lot of time praying. At 7am we started watching the news and then tried to find out if our kids were in school. I started making calls around 7:30 and finally reached someone at the clinic around 8:30. They said that I was scheduled to see a nurse practitioner not a doctor and that she specialized in headaches. This is not what we were expecting. She had canceled all her appointments for the day and was not at work. We told them our situation and asked if they could find a way for us to see a neurologist since we were already in Little Rock. When we told them why I had been referred they said that the Neurologist who specialized in that area canceled all his appointments too and was not in. They finally told me I could see a doctor in a different specialty field but that she would still be a neurologist. At least we would not be wasting a trip. We quickly showered, packed and left the hotel. (Which means we missed the ducks again. We arrived to late the day before because we pulled over to sort out all the mess with my canceled appointment. Now we were leaving the hotel several hours early.) We were really looking forward to having some time unwind and relax before the appointment. I even took all 4 of my Bible studies thinking I would have some down time.

As we were leaving the hotel God just kept giving me the song that talks about God turning things into good as only he could. I felt God's peace as he kept whispering these words to me. Sometimes what seems like a rotten deal to us is something that he is going to use for good. I just needed to trust him. Maybe God new all along that we were not suppose to see the one I was scheduled to see. After all we went from having an appointment with a nurse practitioner that specializes in headaches to an actual Neurological MD. We really felt God's hand moving us through this.

We arrived at the clinic and they got me right in. I actually was moving from one room to another so quickly that I was having trouble filling out all the new patient paper work. We were only in the room for a few minuets before the doctor came in. They told me I would end up seeing a woman but it ended up being a man. I guess he drew the short straw. He was pretty nice. Started asking me about my headaches. We finally established why I was really there and he said "boy would the nurse be overwhelmed with this. This is not what she does". So again we felt that God was at work. He asked if we had any medical records with us. I told him that my neurologist in Fayetteville sent them to Little Rock months ago so all we brought were the MRI scans. We were told before leaving Fayetteville that all of my medical records had been signed out and sent to UMAS. I felt uneasy about weather or not they would have the actual MRI images or just reports so we had a copy burned for us to take. That took several trips to Fayetteville and I kept thinking that I was being paranoid and that I was wasting my time. It ended up being our saving grace. At least we thought so. They were not able to locate any medical records for me. The doctor spent an hour just typing notes form the records that we brought from home. We did not have a copy of any labs done through neurology, or the spinal tap or any notes that were taken from those initial neurology appointments. Needless to say he was winging everything except the images he could see on the scans and the things we could tell him. He did several test to check my balance, my memory, strength and how much I could feeling I had in my hands, feet and legs. I was not able to feel any of the pin pricks or vibrations in my right foot. I was not able to keep my balance during 3 different test and I could not repeat all 3 words I was supposed to remember. Finally he left the room so he could read the MRI results.

When he came back he asked if we would like some news. Of course we want news isn't that why we came. He said well it's not MS and it's not Cadasil. Okay so what are we looking at? He told me that I had normal scans for my age. That the lesions were nothing to worry about. We asked him about the balance and memory issues. He said my memory was great and so was my balance. He just did those test and saw that I was unable to do them. We asked him what would be causing the other symptoms that we talked about. He said I was probably having mini strokes and that I should take an aspirin every day. What? He just said my scans were fine. Not to mention that I have already been through numerous test to rule that out. All my MRI reports define the lesions as Demyelination not mini strokes. Didn't he just say my lesions were from normal aging? So what if the lesions are from mini strokes? Would that be causing my symptoms? This is where I feel sick and not for the reasons that I thought I would. He told me it was caused from anxiety and that I needed to get a Psych Council. Seriously? I could not believe what I was hearing. We have scans that show damage, reports that show clinical symptoms seen by a neurologist and test results that show actual nerve damage and this guy is telling me that I have been sick for 18 months because I have anxiety. I managed to keep my wits about me as long as I could. I asked what I thought was intelligent questions trying to make sense of what he was saying and he just kept going back to anxiety. I believe that stress and anxiety can cause a lot of health problems and I am not opposed to seeking counseling if needed but we have too many things that point to something else. I talked to him about the severe B12 deficiency and how I responded to therapy for that. He said I had a placebo effect and that he would not count that as a reliable treatment. I finally had enough and had to leave. I still kept calm but made it clear that I was done and so was he.

I left with disbelief, feeling sick to my stomach and feeling like a failure. We had no new answers and no idea where we go from here. We have spent thousand's of dollars and we have done everything the doctors have asked us to do. Even when it seemed useless we still gave it a try. I am tired of chasing rabbit trails and having my body poked and prodded. I do not know what to do with the information that we received today. I just know that I want the appointments to end and I want my life back. If I have any anxiety it is because I have been sick for 18 months and have been through 6 months of intense medical testing with no solid answers; only conflicting medical opinions. I am weary and I am tired of fighting for a solution.
I don't know what good came from this trip or what we are supposed to learn from this but I do know that God is in control and that he is the great physician. I do believe that he can still turn this into something good. We just might not see it today.