After 3 1/2 years of not knowing 100% sure of why I became paralyzed, we finally have an answer.
In June, I saw a new neurologist. He works with Ohio State University which is a leading hospital in spinal cord injury in our area. My case was recommended to him through the Ohio State Neurology department. To be honest, I did not want to go. I have had my fill of neurologists and tests and have developed quite a bad case of medical phobia. But Jimmy was very persistent that I needed to do this, so I agreed.
At our first visit, the neurologist told us that he wanted us to come back for a follow-up visit and wanted to take all new MRI’s. I asked him why and he said that it had been over 3 years since my last set of MRI’s and he wanted to check on Multiple Sclerosis. I did not want to hear those words again and told him that Cleveland Clinic told me they ruled out MS. He said that was nice of them, but that as my neurologist, he would not rule it out unless he saw new MRI’s. He said that if the MRI’s were clean, he would rule it out but not until then.
So, today was the day. I was really dreading the “what if’s”. Not only the “what if it is MS”, but the “what if it is not MS and here we go again”. I just hated to head down that very emotional road again. I really tried to convince Jimmy that I should cancel the MRI’s but he wouldn’t even take me serious! I asked for prayer from my faithful Facebook friends and asked God to please help me no matter what.
We arrived at the facility at 7:30 a.m. and the MRI’s were started. The lady told me they would take 2 1/2 hours because they were doing them with contrast and without contrast. After 30 minutes I was already in a lot of pain and extremely uncomfortable and my legs were starting to spasm. I prayed and told God that in the Bible, He made time stand still and that today I would really appreciate it if He would make time go faster for me! After what seemed like about an hour to me, the lady pulled me out and said, “I am going to inject this die in your IV and you will go back in for about 20 minutes and you will be done!” I said, “Done, like with this part? Or done, like completely done?” She said, “Completely done.” I really was in there for over 2 hours but it did not seem like it. I just thanked God and thanked Him for answering my prayers….and yours! Thank you so much for praying for me!
My neurologist wanted to see me today at 3:00 so that he would have time to look at the MRI’s before meeting with us. I was very calm before talking with him. Jimmy asked me if I was nervous and I told him no. I really felt a great peace in my heart that God was going to take care of everything one way or another. I was hoping for good results, but I wasn’t scared.
Now here is where the story gets good!! The neurologist came and talked with us for almost an hour. He showed us all the MRI’s and talked us through them. They were all normal! There were no MS lesions to be found on the brain or the spinal cord. He shared that if there had been lesions, he could point to them and show me proof that I had MS. He said it was wonderful they were not there and I couldn’t agree more!
However, what he shared with us next was what we have been waiting to hear for over 3 years now. He diagnosed me with Idiopathic Transverse Myelitis. Cleveland Clinic hinted at this but never came right out and said it. All we have from them is that “there is a possibility that a virus did this”. They mostly just told me what I did not have. Now for the explanation we got from the doctor.
He said idiopathic means they do not know the exact source. He went on to explain that in Transverse Myelitis, a virus or something causes inflammation around the spinal cord. He said the virus swoops into your system, wreaks havoc on your body (spinal cord), and swoops out again. He said it is very hard to find the medical proof to say what caused it. So, it is known as idiopathic. He said that 1/3 of all Transverse Myelitis cases are idiopathic. He said that 33% is a huge statistic so it is not rare at all in TM. He said that transverse means it has went across my spinal cord affecting half my body – not just one foot or something. The myelitis part just means that inflammation damaged the spinal cord.
He then said that he was not a general neurologist. He was a neuro-immunologist. He only deals with MS, Transverse Myelitis and spinal cord injuries. He does not deal with seizures or headaches or anything else – just these areas. Jimmy asked him if he had any other patients like me and he said that he had many patients like me! Boy, talk about making you not feel so weird and alone! That was encouraging! He said that TM is truly almost 1 in a million and that it is extremely rare. He said that it is very rare in general neurology and that is why neurologists have such a hard time diagnosing it. However, he said it is not rare to him as it is one of his specialties.
He offered to run many more tests if we wanted – evoked potentials, spinal taps, chest x-rays – all the stuff they did at Cleveland. He said that if I needed him to keep digging to try to find the exact name of a virus then he would order any test that I wanted. I asked him if anything he would look for would be life-threatening or would do further damage to me and he said no. I asked him if he found something could he reverse the paralysis and he said no. It would just be looking for any kind of name to the virus. I told him that I was at complete peace with where things were at and I was very glad that it would not progress or kill me. He said that in all honestly, if he ran all those tests, it would still come back that they would not know the name, but he was willing to try if he thought it would help my emotions. I told him I thought my emotions would not handle going through all that again very well.
I asked him about my spells that I have at times and he said that although it would not be normal for most of you, it is normal in my life. He said that when your spinal cord has taken a hit, that your central nervous system is compromised. Because of that, it does not run on full capacity and therefore, it bottoms out very quickly. This is why you get dehydrated easier, fatigue easier, why your ears will ring or you may feel confused if you have overdone it, and even why you can feel tingly and weak. He said that stress, infection, heat, cold or overdoing it all can really do a number on you. He said it is not comfortable (amen to that!) but that it is normal and does not mean that something else is about to happen to you. That was very comforting to me!
He then talked to us about some private things about spinal cord injury and how it affects your life. He knows exactly where we live and it was just really encouraging for him to bring up our world and completely understand it and help us and give us tips. He wants to see me in 6 months or sooner if we get to missing him too bad!:) He is more than willing to help in anything I want or need – from equipment, to medication, to therapy – anything. All we have to do is say the word. My hope has been restored in neurologists!!
How do I feel about all this? I told Jimmy that I have felt like I have had a skeleton in my closet that I have been afraid of. I would crack the door every now and then to see if it was there but I would slam it back shut in fear that if I looked, it would be there. I feel that today, the closet door has been flung wide open, and alas, there is not a skeleton at all! I feel so giddy about an answer! I know it sounds crazy, but it is very unnerving to not know why something this drastic has happened to you. It makes you afraid that at any time you are going to wake up with something else drastic going on! I have had to keep much control of my mind to not dwell on those dark thoughts and the Lord has been very faithful in helping me. However, I am unbelievably relieved to have an answer! I thank the Lord (and my hubby who wrote a precious blog post about his feelings) for how this has all worked out. God knew who to send me to when and Jimmy made sure I didn’t back out. I just cannot believe that after all this time, we finally have an answer! Yes, today we celebrated!!