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First I am not or any way giving medical advise to anyone this is just my story. This sounds crazy but when I passed the 5 year mark I became confused why, why am I still here still alive? Still walking, talking and working. That was 2001. I was showing symptoms in November of 1996. I started on Rilutek in June of 1997 and over the next few years a lot of different pills were added. If i remember correctly I was taking 53 different pills a day. Most of them were from a book about keeping your brain healthy. They included Chelated forms of minerals like magnesium and zinc. Along with potassium and creatine. Different vitamins but no iron. After 10 years of this I just stopped. $16k a year was beginning to be too much. So I told my wife I’m done. I stopped all medications, minerals Drs just everything.
Slow forward instead of fast forward. I haves seen 16 Neurologlist with 13 of them saying ALS/MND while the other say they just don’t know. I have had different treatments for diseases that mimic ALS. None of them helped. I talked one of my Dr’s into doing a muscle biopsy and it showed typical ALS muscle wasting. My muscle atrophy is getting worse but my Fisticulatons have decreased. Dr Alan Pestronk in regards to his Covalent GM1 Antibodies test, NVG’s Electromyography (EMG’s) 8 total over the years and Nerve Conductions study of both arms, legs, hands, tongue and more. I have rounds of IVIG’s (2) about 2 years apart and neither helped me. I began to have a foot drop about 4 years ago and just recently got AFO’s.
I know all this just doesn’t make sense, 30 year next year. I’m living both a nightmare and a dream. All I can say is I try to stay positive. I believe that I must believe. I have heard Motor Neuron Disease (MND) Amyotrophic Lateral Sclerosis (ALS), Charcot-Marie-Tooth(CMT), Progressive Muscular Atrophy (PMA), Multifocal Motor Neuropathy, Progressive Muscular Atrophy (PMA), Hereditary Neuropathy with Liability to Pressure Palsies (HNPP). Godspeed to everyone.