A diagnosis at last ~
Let's face it, this blog entry could have been named many things. 1. Because it covers many things, and 2. Because it will be long (there's your warning), so turn back now or plan to read it in stages. So grab a drink (have one for me too!) put your reading glasses on (if you wear them), get comfy and sit back. Here we go!!!
I haven't felt well for some time. But honestly, who can run to the doctor with every little pain or thing that bothers them? I didn't, because I was often brushed off or made to feel nothing was wrong. OR, here's a good one, it was all blamed on being overweight. I honestly think some others think that people who are overweight don't KNOW they are. But I digress...
In retrospect, I can look back and see I've been physically unwell for some time. I ignored many very important signs because I felt like I would be ignored, and maybe they would actually find something wrong with me.
SO here's what brought me to this point;
3 Weeks ago 75% of the left side of my body decided didn't really want to have feelings anymore. It decided that it wanted to be weak and not participate at all. No fun and games, no dice, no way. Within 2 weeks everything on the left side of my body was numb with the exception of my left arm, the left side of my face, and my back from my spine to my left shoulder starting at the bottom of my shoulder blade. I was urged by a very good friend of my sister's who has a doctor that even though it had been going on for 2 weeks, I should really go to the emergency room to be evaluated for a stroke. So that Friday night, the 1st of March my daughter drove me to the Emergency Room. They immediately triaged me for a stroke and were 100% sure that was not the issue. But they were concerned enough to have me stay for further testing. We sat in that ER waiting room for a very long 5 hours. There were a lot of traumas and so it just took time to take care of the patients who were critically ill. With every hour, even though the left side of my body was numb, I was also experiencing excruciating pain mostly in my left rib cage from the back to the front and the midline. This area is controlled by your thoracic spine. Once they finally got me into a room in the emergency department, it was still a lot of waiting, a lot of pain and a lot of unknowns. The neurologist came in and evaluated me, and I told him that I had already been referred by my primary care doctor for MRIs of my thoracic and lumbar spine. Those appointments were 10 days away. He said they would really prefer that I stayed at the hospital to have the MRIs as soon as possible. I was angry, I was in pain, and I didn't want to stay there for hours and hours to wait for those tests. The attending physician came in to speak with me and I told him the same thing, so he said: "Let me go talk to the team." After discussing this with his team and the neurologist, they decided that 10 days was too long to wait to find out what was going on and basically told me that it would be highly unadvisable for me to leave the hospital without having these tests performed. The next day they were able to do the lumbar and the thoracic spine MRIs. It was about midday but the neurologist who was on duty came in, Dr. Williams, to explain to me some things about my results. They told me I had Transverse Myelitis on my thoracic spine at T4 and T5. They said that one out of every 8 people in a million gets that, so basically they told me I was 1 in a million! Yay, what a great feeling!
They then informed me that they were admitting me overnight for a complete neurology work up. That was Friday night March 1st, today is Wednesday March 6th and I'm still inpatient. Tons of blood had already been drawn and tons of labs had already been ordered. One of my nurses remarked at how many lab orders and were being put into my file and how quickly it was happening. This was both reassuring but also frightening. Fast forward to Sunday, I finally got into a regular hospital room and they had ordered additional MRIs of my brain and my cervical spine. All of these were done with/without contrast. Those didn't happen on Sunday and they said they were gonna try and get them done on Monday. But late Sunday evening my nurse came in to tell me that Paul the guy from the MRI said that it was empty and if I could come down there I could get my images done, but if I waited until Monday the outpatient appointments would take priority so it could be as late as Monday night to get them done. So I decided to go ahead and do them early Monday morning, I'm so glad I did. At about 12:30 on Monday the neurology team came in to tell me that a cervical spine image looked fine but my brain image showed some lesions. They said they weren't sure how old they were, they just knew that they weren't currently inflamed like the nerves on my thoracic spine. They then went on to tell me that this was consistent with a disease called Relapsing Remitting Multiple Sclerosis. Yes I have multiple sclerosis. It's also been discovered that I'm currently suffering from type 2 diabetes. The treatment I am receiving in the hospital for the MS is IV infusions of steroids called solumedrol. It's believed this will reduce the inflammation of the Transverse Myelitis and bring back sensation to the area of my body that's currently being affected. I asked a lot of questions. I had already done a little bit of reading and I was a little suspicious that this might be the case. The main thing I wanted to know is "Will this kill me?" He said, "No.", and that's all I needed to hear. Because that told me this is manageable even if it wasn't curable.
I don't want pity. I don't want sadness. I don't want anyone to feel sorry for me for what I'm going through, or what I might go through. All I need are your prayers, love, and support. I would have taken only one of these diseases, because learning to manage one is hard enough. Learning to manage two will take up a lot of my time.
My employer has been highly supportive as have all of my immediate family that I've told already.
Today I will be having a lumbar puncture so they can send cerebral spinal fluid off for further testing to help confirm this is the actual form that I have. Then hopefully I can go home with all of the new information I have, and medical support (MUSC has an amazing MS clinic I will treated at!!), and start tackling both of these demons.
I know this is a challenge but I feel very fortunate that it's not something worse. I will handle this. I will do what my doctors tell me and I will do my very personal best to get better. I love all of you and thank you for your prayers and support so far. And I apologize for having to be so vague for the last few days but there were still a lot of unanswered questions. I'm a facts girl, and I wanted to have my facts as straight as possible before I presented everything to you.
Now make me a promise. Don't neglect your health as I've done for some time. If you start having unusual or new symptoms, seek treatment!! If that doctor won't listen, find another one!! You know your body better than anyone! It was very hard to describe to people the numbness but also the excruciating pain and at one point I felt like they thought I was making it up. This sounds terrible, but I was pretty relieved when they found those lesions. Then I knew that, while it was in my head, it wasn't ALL in my head.
My amazing daughter has been through this with me every second, by my side. Beka I will never be able to show my gratitude for your love, help, support and all the laughs you have provided me with. You are truly my greatest treasure.
I will be posting updates on this page. Feel free to ask me questions, if I don't know the answers I'll try and find them for you.
For now, as Porky Pig would say, "Tttttthat's all folks!"
I love you~