Mark Radell

Hello everyone, I'm new to this group and I thought I'd tell you my story to see what you think. I've omitted many details to help keep this somewhat short and also because I was out of it for the first 6-8 weeks. I will try to provide additional details to anyone that would like them. On March 3, 2006, I went to work as normal and by lunch I was feeling like I had the flu. When I got home I had my wife take me to the immediate care center to get checked out. By the time I walked in there I had turned ashen gray. They immediately took me to a treatment room and after the Dr. listened to my chest he immediately called for an ambulance. In route and IV was started needless to say this totally freaked me out. When I arrived in the ER they could detect no problem other than extreme chest congestion. My condition continued to deteriorate rapidly, I was sent to CCU and by that evening I was on a respirator. Over the next few days my condition continued to deteriorate with failure all other organs including. It took them several days to diagnose my condition, the diagnoses was that I had NF in my right lung! A series of multiple antibiotics was started but I did not start to recover. Finally after 14 days by fever spiked to 107 degrees for about 6 hours, after this my fever broke. A little while afterwards I had my first surgery, arthroscopic surgery to relieve fluid buildup in my lung and to remove some of the scar tissue from the plurol lining. I remained in CCU for over nine weeks, after about seven weeks my kidneys start working overnight (by doctors had told me it might take a year or more if they did return to normal function) and I was eventually weaned off the respirator. During this entire process I had lost all use of my muscles after about four weeks, this time coincided with my second lung surgery. An MRI of my spine was done to check for nerve damage and it showed nothing. The doctors assumed at this point that I had critical care Myopathy. Even my jaw didn't function so I had to remain on a feeding tube. I was transferred to a intensive rehab facility to regain the. After eight weeks I had minimal improvement at best, I was finally able to eat pureed food but my other muscles were not progressing. Finally at this point a Neurologist was brought in he had a spinal tap done and found the high protein level in the fluid. He had a round of IVIG done but after several more weeks no additional improvement was seen. He then had an EMG done and buy it, it was concluded that I had CADP (chronic axonal delaminating poly-neuropathy). At this point I had plasma phoresis (sp?) done for seven days. Again after this no significant improvement was noted. I should also note that even though I had lost muscle control at no point did I lose feeling in my body. At this point (over five months since the start) I was transferred to a non acute rehab center. I visited a second Neurologist soon thereafter and through additional testing my diagnoses was changed to AMAN (acute axonal motor neuropathy). I'm still at that facility, I'm slowly regaining the use of my muscles but I'm still unable to perform any functions (including eating) for myself. Recently a follow-up EMG was done and it showed continued neurological improvement, especially in my arms which is expected due to the shorter nerve length. Has anyone ever heard of neurological problems like this being associated with NF? I know my infectious disease specialist told me having NF internally is very rare, she could only find five other cases of it occurring in a lung and of those one other in I were the only two survivors. Does anyone else in this group have experience (or have they heard of) having NF internally? I'm sorry for this being such a long post, but I'm becoming very frustrated with everything that has been going on. I've lost my job, have been constantly fighting insurance, have spent a lot of money out of pocket in I'm still unable to do anything for myself. One thing that makes it worse is that up until this I have worked over 25 years without missing a day for illness, which is one thing I attribute to being able to survive the illness. Please feel free to contact me if you have any questions concerning my experience.