I first want to thank everyone for all their thoughts and prayers. I wish I could personally tell each and everyone of you exactly how special you are to Dennis and I. We can't get through this alone and it is very comforting to know we have so much love and support from family, friends and co-workers who we consider dear friends.
For those of you who do not know about Dennis's illness we were admitted to the hospital June 13th and Dennis was diagnosed with viral meningitis days later. He spent the first week in extreme pain from fluid surrounding his spinal cord and brain with constant high fevers. The doctors tried to treat the pain with morphine, but even that wouldn't ease Dennis's pain. On June 18th just as the pain from the meningitis was easing Dennis starting experience numbness in his limbs and that night he was diagnosed with transverse myeletis. Transverse myeletis is viral disease and causes inflammation on the spinal cord caused by a single lesion in the thoracic part of his spinal cord and treated with heavy doses of steroids. After a few days Dennis started improving little by little and he was able to move his toes, ankles and bend his knee. On June 24th, we were sent to a rehabilitation center where he would start an intense strength and endurance training to help him learn to walk again. He started experiencing more and more pain everyday and started to develop minor issues from his waist down. On June 29th, we were sent back to hospital. The neurologist ordered another MRI to see if anymore lesions had formed on his spinal cord, but thankfully no more lesions were found. Dennis was put back on steroids and has improved in the past couple of days. He is able to wiggle his toes and move his right leg on his own today. We are now waiting to transfer to Mayo. Mayo is a local hospital who have the top neurologist in the country. Dennis has a very atypical case of transverse myeletis because he has only lost movement in the left leg and partial in the right leg. Most patients diagnosed with transverse myeletis are paralyzed from the chest down.
Please keep us in your thoughts and prayers! God has given us the strength to get through this so far and I know in the next couple of months we will need more. Dennis has a long road ahead of him, but we are very determined to beat this disease and fully recover. We do not know how long the recovery process will take, or if the lesion on his spine will ever go away. Our concentration right now is rehabilitation and I hope I will be able to write soon that he took his first step.
We love you all and I will continue to update you daily on Dennis's status.
Heather
Hi Heather & Dennis,
ReplyDeleteMy name is Carly Settles. I received an e-mail about your story from my sister, who lives next door to a friend of yours, Trent Seidl. I am very sorry to hear about Dennis! I thought I would leave a comment, because I know all too well what he is going through. In August 2007 I was training for a half-marathon, which is extremely out of the ordinary for me...I'm not a runner. As part of my training, I rode a stationary bike a few times. After getting done riding the bike, I realized my feet had "fallen asleep" which had happened before, so I didn't think much of it. Two days later my feet were still numb. After about 2 weeks of my feet feeling numb and my doctor ignoring me telling me "if it's still there in 2 weeks come back to see me" and “keep running you’ll be fine”, when I could barely walk, I couldn’t take it and went to the emergency room. They gave me a shot of steroids and sent me home. The next night the numbness was coming up my legs, and into my abdomen. The pain was so bad, I couldn’t stand up straight and was having real trouble walking. My parents took me back to the emergency room and I was admitted into the hospital. I spent several days in the hospital. I think I got about 8 MRI's, a couple CAT scans and one very painful spinal tap, wondering what was wrong with me. They finally diagnosed me with Transverse Myeletis. I had never heard of it and wasn’t real happy I had it. I was 24 years old. They had no idea why I got it and I still don’t know. At any rate, my symptoms got worse before they got better. I had a hard time walking for a while, (I walk and run fine now). The worst symptom I had was a severe tightness in my abdomen that went into my arms and hands. My arms felt very heavy and my hands were so numb, they hurt to use them. That lasted the longest (early September – late November/December). I had to be out of work for several months because I couldn’t sit at my desk and I couldn’t type it was too painful. I had a doctor locally (Newburgh, IN) that diagnosed me. He prescribed Gabapentin, of which I took three pills three times a day. I also visited a neurologist in Indianapolis, IN who prescribed Celebrex (arthritis medicine). And I worked from my diagnosis until about November to get an appointment at Johns Hopkins. After doing a lot of research my Mom found that Johns Hopkins had the leading facility on TM and Multiple Sclerosis. My Mom and I flew to Baltimore a few weeks before Christmas 2007. Dr. Douglas Kerr is now my primary doctor to all things TM. He orders any tests or medicines I need through doctors here and then they send him the results. Luckily my symptoms have all but gone away and I’ve only had 2 MRI’s since my diagnosis. Both tests have shown that my lesion has gotten a bit smaller (it’s still there, just no symptoms) and the swelling has gone down. I have a few days where my neck hurts or my hands get tingly and tight. But, for the most part, I am healthy and don’t have to take any more medicine, which makes me extremely happy.
I apologize for the lengthy story. I just thought it might be helpful to know there are others out there with this random crazy disease that have made a full recovery. I had never heard of it, didn’t know anyone with it and was really scared when I got my diagnosis. I am extremely sorry to hear about Dennis and hope that he makes a speedy recovery. Please let him know that he will be in my thoughts and prayers. If either of you have any questions, or just went to vent about the situation, I am more than happy to listen.
All my best!
Carly
Carly, thank you so much for your comment. Would you please give me a call when you get a chance? It would be great to be able to talk to someone who has already gone through this. I feel lost.
ReplyDelete904-545-6235
Heather