My Story (The Diagnosis).. post #2

So on that Tuesday night, August 23, 2011, I walked into the ER with help from my husband. I was very scared and unsure what was happening with my body. I told them I thought I was having a stroke or I was going paralyzed. They brought me back and they gave me a catscan (they were thinking I had a stroke or they were looking for signs of MS) They told me all the symptoms I was having pointing to the MS. The catscan came back that I was fine and they diagnosed me with a pinch nerve and sent me home. I was to follow up with a neurologist the next day.


The next morning, August 24, 2011, I woke up numb and tingling on my right side (arm and leg) I called the neurologist and they told me that I can be seen the 2^nd week of October.. Ummm, This is the 3^rd week of August… are they CRAZY? My husband yelled in the background that I needed to be seen today and ASAP. They said fine come in so my husband and I were on our way to the Neurologist. The neurologist did some neuro tests with me and he said he noticed my right side was weak. He wanted me to get blood work and a MRI of the brain and neck. He said I would have to wait a few weeks to get the approval for the MRIs.


About two hours after we were home I was feeling worse. We decided to go back to the ER. I brought all my scripts with me and had all the blood work and MRI’s done that night. The ER doctor came back with all my sugar levels were good and the MRI’s were good so it is most likely a pinched nerve. Now I did move furniture around in my classroom setting up for the new school year so I could understand hurting something.. but a pinched nerve from my neck to my fingers to my toes.. that must be one long nerve! So I went home thinking I had the pinched nerve and I just needed to suck it up with the discomfort.
　
Then, that Saturday, August 27, I received a phone call from the hospital. The nurse told me that my Lyme blood work came back with a FAINT POSITIVE. She said that I needed to start Doxycycline (an antibiotic) as soon as possible and that I had to get to the pharmacy soon b/c this is the day that Hurricane Irene was hitting New Jersey. I started the medicine and boy was I sick from it: nauseous and dry heaving- it was strong and I had to take it without food.. it was terrible. That night we were up watching all the hurricane coverage but I was really loosing the normal feeling of my leg and arm. I was getting worse. I continued with the medicine on Sunday.


On Monday I made a call to the neurologist telling him I tested a FAINT positive with The ELISA Lyme blood test. (I am writing faint in capitols because so many people who have Lyme can have 3, 4, 5,..negative blood tests before they come up with a positive.. this disease likes to hide!) He told me that I need to get a more accurate test called the WESTERN BLOT TEST. I went to get my blood work that day and the doctor said it would probably not get back to him for a few days and that he would give me a call with the results. After the blood work I even went into my classroom to continue setting up ( just ignored the feelings I was having).


On Tuesday morning I went into my classroom again and continued to set up. I decided to take a break and meet my friend for lunch. As we were eating I started panicking that my left side of my body started going numb. I ended up leaving lunch early and drove home ( I know, that probably wasn’t the smartest thing to do). My husband then insisted that I call my neurologist to let him know that I was getting worse. The nurse told me he would call me back later that day.. well he never called. I knew something was wrong with me- I seriously could not drive I was numb. I still have not been able to drive a car since that Tuesday morning ( August 30, 2011). I asked my mom to drive me to my classroom Tuesday night to help me continue to set up. I told my mom- I think something is wrong and I need my room to be ready for the first day of school.. just incase I need a substitute that day. We got the room ready and that was the last time I did anything in my classroom (I really miss teaching).


I woke up Wednesday morning, August 31, and waited for the neurologist to call me back figuring he would first thing in the morning. Well, I was wrong, 2:00 came and no phone and I was feeling worse! I decided to call the Neurologist emergency phone number (his cell). He answered kind of annoyed with me telling me that he did not have my blood work results and he can’t do anything to help me until he has them and says "OK KID!" Well little does he know that I am NOT a KID and I am a smart woman so I decided to call Quest (where the blood work was taken) and asked them if they had my results or when they would be in. They then told me that they sent the results over to the doctor YESTERDAY!!! I asked if they could please send them again right now and they did. I waited about 20 minutes before calling the neurologist back on his cell so that the results could get there through his fax. He seemed very annoyed that I called him and I told him he got my results yesterday and he should have another copy through fax right now. He then said I need to learn to be patient and he will let me know when he gets the results. He said that his office is closed right now ( 3pm on a Wed.) and he will get back to me tomorrow. I begged him to please call me as soon as he gets them.


Well at this point I was hysterical!!!! My phone then rang 2 minutes later with him telling me that..Yes, I am positive for Chronic Lyme and that I will need intravenous medicine and a spinal tap. As I was crying on the phone. I then I asked the neurologist what is my next step was. He then replied with "ugh, I JUST TOLD YOU. My office is closed and I will have my nurse call you tomorrow or Friday." Well, I hung up a hot mess. The kid in me came out and I called my mom hysterical. She then called the neurologist and let’s just say I am not sure what went down but I never saw him again! Haha.. Yay Mom! ( see we all need our moms still at 27)


Well, I needed to be seen and I need to go to a good hospital. My husband, parents, and I decided that I would go to Jefferson University Hospital in Philadelphia, PA. I went into their ER and waited for about an hour. They took me back and I went over everything with the doctors. He was able to get my blood work from the other hospital but when they called my neurologist he told them he never received the paperwork (what a LIAR) I told the ER doctor to get my records from Quest. Then after the ER doctor received my results he then decided that I needed to get a spinal tap.. and I was scared! The spinal tap lasted about 40 minutes and it was so uncomfortable and painful (I was numb but I think I was just scared because hey.. they are pulling fluid from my spine!) I was then told to lay flat on my back for 2 hours without moving (you can get a real bad headache from spinal taps if you do not lay flat on your back).


It was now early Thursday morning, September 1^st, the ER doctor comes in with a neurologist. He puts the IV in and tells me that I am being ADMITTED…… little did I know that my body would never be the same and that I would be there for 2 weeks……..