- CASE FILE
About 6 years ago I have gradually lost my balance, have drooping eyelids, my speech is impaired greatly, impaired swallowing(can't eat now)
ABOUT THIS CASE FILE
My name is Alex and I am 67 years old. I am seeking help because I have been trying to find out what is ailing me. About 6 years ago I started with mild symptoms of my balance being off and my speech started to be slurred. As time went on my eyelids started to droop, my speech started to get worst and my swallowing started to get worst. I also have paralyzed vocal cords. I then had to stop my job as a driver. I started seeking professional's for an answer and to this day no one knows what is happening to me. I have been to every doctor there is and have had many procedures and radiology appointments for different tests and multiple blood tests. I have been to the Neurological Institute of New York,( there my doctor said that there is a antibody in my blood that couldn't quite be explained), I have been to multiple ENT doctors, I have been to Gastroenterologist. I have had Genetic testing done. I have had Plasmapheresis treatment with no outcome, I had Steroid I.V. Therapy again no outcome. I also had Rituximab(I think that is what it was called) Therapy with no outcome. I have had MRI's with and without contrast. X-rays, Ultrasounds, EMG's of the whole body and of my face and tongue, I have had swallow tests(that's how they found out that my food was going down my air pipe. and Speech Therapy. Many others that I can't even remember. My last resort was the Undiagnosed Disease Network at Massachusetts General Hospital. We spent 4 days there and there was no result. A few months later we were notified that there was something not right with my blood. They had suggested seeing a Hematologist, as I did. My doctor had taken another kind of Genetic testing and come to find out I have CLL (Chronic Lymphocytic Leukemia), but this is not what all my neurological issues are from. I take Imbruvica 420 mg/day. This is a targeted medication. I do take Trazadone because I can't sleep. I was also prescribed Adderall because I have no energy. Then there are the OTC medications like Immodium for my diarrhea, sleep aids, mucus meds. My hematologist did test me for Oculopharyngeal Muscular Dystrophy, and that came back negative. That also was a genetic testing. I have no other conditions eg. diabetes, high blood pressure. My blood pressure has been a little low since being diagnosed with CLL and taking the medicine and being on the feeding tube. It has been a little better lately, otherwise I always ran a perfect BP. I had a Peg tube put in about 4 years ago and that was horrible and I started learning to eat without choking so I had it taken out. So, not knowing that now my food was going into my lungs and the severity of doing this (because my air pipe is never covered) I had Pneumonia and was Septic back in February and was hospitalized for 2 weeks. They put the Peg tube back in and this is how I now eat. Not very exciting. Because my air pipe is never covered and my swallowing function is impaired so, I have a cough. I'm always coughing up phlegm because it starts to drip into my air pipe and makes me choke. It's worse at night. I also have a little incontinence so I have to wear disposable underwear. I am mobile and do little things around the house, but not to a great extent. This condition has impacted my life immensely. Mainly I can't eat anymore, I can't work, my wife and I can't go out or away, I can't do the things I use to do. I can't even talk on the phone because people can't understand me. I don't drive anymore because of my sight. It has made me secluded in my house. So, please if there is anything that I might not have tried please let me know. Thank you.