Test Results tomorrow.......

Tomorrow we see Dr. R for my latest MRI results and evoked potentials results tests. I just want this to be over with. My appointment isn't until 1:00. I've done well with my vitamins, herbs, cardio and sleeping well with the help of the klonopin. I pray to God that I don't have to deal with anything else associated with this syringomyelia. This is devastating enough. At least by tomorrow night I will be working on my plan to get rid of this. I want answers on how many people have gotten theirs to disappear on their own. I've only gotten the bad news. I want to hear some good stuff even if its a rarity.
Had a much needed girls night at Cathy's last night. Laughed so hard my face and stomach hurt. I love these girls :)

First round of testing........

After my first official visit with Dr. R last Monday I was told to go home and call the office back to set up my tests. I was pretty shocked that I was going to have my next MRI that Wednesday and my Evoked Potentials test that Thursday. It felt overwhelming, especially the part where I would have to have a closed MRI when I almost freaked out in the initial open one. Dr. R told me to take my Klonopin when I wake up and then another before my 11:30 test. My parents came to pick me up and we headed over to the Kenosha Radiology Center. I was getting loopy by then and got right in. I had a super nice tech who I handed my two CDs to and she promised to play them one after another. The first one was a rock Christian band called Kutless and then a relaxing one that Crystal had burned for me when she came for a visit from New Mexico. It couldn't have gone better. I felt like I had more room in the closed MRI. It's more of a dome shape and I didn't feel like a wall was crushing me like the open one. Also being in the closed one shortened the time by a whole hour! I had to also wear this crazy thing over my face for the brain part. Nothing bothered me, I could hear my music over the crazy MRI banging and I actually fell asleep. They had to shoot me up with dye at one point too. Only this time I knew about it. When I was done my parents couldn't believe I was out so fast. We went to Panera Bread for lunch. I wasn't very hungry but had French Onion soup and some strong coffee to get out of the daze I was in. It was just nice to sit and relax with my Mom & Dad. Then the next day I had to go back to Dr. R's office for the Evoked Potentials. It's a very strange test. I sat in a lazy boy chair and was hooked up with electroids on my head, back and hip. This very nice woman named Patty did the testing for 2 1/2 hours. We talked and talked the whole time and she made me feel very calm and relaxed. This test shows how well your brain and spinal cord communicate. She of course didn't give me any details but said I did well. So here it is almost a week later and no word. So I figure nothing urgent was found, but I still believe that doesn't mean something else wasn't found that isn't an emergency. I have to wait all the way until December 21 to get the details.
Right now I'm doing my best to take care of myself. It's amazing how easy it is to make the right food choices and stay on the cardio machines for an hour when you know it's about fighting for your life and not just to "look good". At this point I'm sticking with high protein, lots of veggies and NO sugar which is a major cause of inflammation. I'm taking lots of vitamins which I've never really done before, or at least stuck with it. I'm taking 3 grams of organic flax seed oil, Vit's C 1000 mg, Vit D 2000, Calcium 1200, Magnesium 250 mg, B12 5000 mcg sub lingual and the herbs green tea extract, ginger root and ginkgo biloba. I'm experimenting with dosages on some of these. I'm determined to make a difference on my next MRI which I guess will be in Feb. I MUST see shrinkage on this cyst. With all of the support and prayers I'm receiving how can I not see a change?
I'm literally overwhelmed with the love and support I am receiving from everyone. The way that John & I were brought to Christ 9 months ago, the way he brought just the right Doctors into my life one after another and the way I was diagnosed right away (I've read nothing but nightmare stories of being misdiagnosed and getting the run around by Dr's from many people, or just not receiving the right care etc...) My family, Johns family, the old friends who have been brought back into my life (some 20 & 30 years later) who are also Christians and are praying for me and helping me. The support at our church and from our Pastors. If this doesn't strengthen my faith in God then nothing will! He also let me witness a miracle that blew me away. He will heal me. This I know.

First official visit with Dr. R

November 9th my world comes to a crashing halt. I had a morning appointment with Dr. R, who is a neurologist. He is supposed to do an EMG on me to determine if I have carpel tunnel. I was also told before hand that Dr. T, who is the orthopedic surgeon that ordered the MRI would be giving me the results of that on Friday November 13. Dr R was just going to do the EMG. So we go through this test, which by the way is very uncomfortable! Especially when you are being stuck with pins! I find that he is a very nice guy and I'm comfortable with him as he talks my ear off while trying to keep my mind of the pain :) He also does all of these reflex tests on me. Hitting me with a hammer all over my body. The worst part was when he stuck needles in the back of my neck (I had a lump and bruise there for two weeks) He then tells me that my lower reflexes are "Terrible!!" OK, so the test is done and he looks at me and says that in his opinion I don't have carpel tunnel, but will have a few more things to look at. Then he just looks at me and says "OK, this is what you have. We found a cyst called a cervical syrinx inside your spinal cord in your neck. You won't be paralyzed (a fact he changed later) or die. At this point I'm starting to hear "blah, blah, blah" because I'm in such shock and panic!! He tells me that I will now be his patient and we need to make an appointment to make it official with my insurance co. and how then I will have an MRI on my brain and the whole upper spine. Also a test called Evoked Potentials. Surgery is only done as a last resort because the spinal cord is very unforgiving and I would have some type of paralysis. So I made my appointment for November 30th and walked to my car like a zombie. Got inside and cried my eyes out. It was John's lunch break, so I called him in hysterics. He comforted me best he could and said he wished he was there to hug me. I then called my parents who were also devastated. I decided to go grocery shopping as planned to keep busy and it just so happened my parents were also on their way there too. So we got to talk while there. The next 3 weeks are a blur. I do know one thing having my Christian faith and having friends (a small army of friends) praying for me took away my pain. Overnight my symptoms disapeared by 90 %. I also visited my new primary Dr who prescribed me the generic form of Klonopin in case of anxiety and to sleep. I'm not embarrassed to admit that I do take it to sleep every night. I know I would lay awake freaking out if I didn't and I think the good sleep I'm getting is helping me to stay stable.
John was off of work the whole week of Thanksgiving which was nice. We had Thanksgiving here and it was probably the most prepared we were and everything tasted great! Just our parents and Kevin for dinner. Then all of a sudden it's Monday and John has a vacation day in order to go to my appointment. Dr. R comes in and tells me that what I have is VERY serious. He has to keep a very close eye on me. He is a spinal cord expert. First the tests on my brain and spinal cord and then an MRI every 3 months. He checks all of my reflexes again and says this time they are normal. Then he is done and says goodbye and leaves the room. All I remember is putting my head down into my hands and crying so hard I can't breath. John hugs me and we both cry. I kept saying "this is not supposed to happen to me?" "Why me!!!"
More later on my week of testing that I just went through and what my first strategy will be.

The Shock

I don't know why I'm doing this blog. Maybe it's for support, or maybe I can help others or maybe it will just help to get all my thoughts out so I don't go crazy.
On September 24, 2009 I was sitting outside on my deck reading a book. I got up and felt as if I had pulled a muscle in my right shoulder blade area. It was strange because I hadn't done anything to provoke this. I had John massage it and I thought it felt a little better. A week went by and my arm started to be affected. My triceps muscle would wake me up in the middle of the night in a complete charlie horse like cramp. My thumb and index finger went numb. I could only lay on my back and basically not move or my whole arm would go numb. I went to the walk in clinic. I was given anti inflammatory drugs and muscle relaxers. They did nothing! I've never had a primary Dr. so I took the clinics suggestions and called one and made an appointment. I had to wait and suffer for two more weeks. Saw Dr. D and she couldn't figure it out either. She had me do a shoulder X-ray and gave me these anti inflammatory patches that really helped with the shoulder pain (but not my arm or hand) She then referred me to an orthopedic surgeon. OK so I go see him the next week where he tells me that my X-ray is just fine. Though I do have to say that even though I know that I'm small boned, that X-ray of my shoulder kind of freaked me out. Wow I do have skinny small bones! The Dr. actually said I should keep an eye on that as I get older with having my bone density checked. He orders and MRI and wants me to have an EMG test to rule out carpel tunnel. At this point I'm still not too nervous. I'm thinking I have a bulging disk or something and I can get a shot of some kind to relive the pain. Ha! I didn't know what I would be in for. More later. I have to re blond my blond streak, take a shower , make dinner and get ready for John and mines last night of Bible Foundations class.