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Amyotrophic Lateral Sclerosis (ALS) Message Board


Amyotrophic Lateral Sclerosis (ALS) Board Index


I was at the prime of my life when I was struck down physically. I have 2 beautiful daughters, finished college, and got my dream career in the medical field. I live with a positive out look on life and am grateful for all that I have. I was diagnosed at 29 with Chiari Malformation. I learned quickly to adjust and push through because I refused to let a disorder control my life. Age 31 I had to have a hysterectomy because of cancer. I watched funny movies for a few days to lift my spirits and returned to life as if nothing happened. Then 2012 something else was happening and I couldn't ignore it. Swallowing became difficult, thought I had a virus, constant pain in feet that started traveling up my legs, laying in bed watching snakes under my skin up and down my thighs, waking up with fingers curled, tripping, going through drinking glasses that I would break weekly, hand writing sloppy, and then the day I kneeled down to tie daughters shoes and couldn't get back up. I thought no big deal. But then it was getting out of a chair, coworkers pointing out changes, weight loss, crying out of no where, to climbing stairs instead of walking. I am still in denial even after the neurosurgeon told me it wasn't the Chiari causing the weakness. He quickly got on the phone with his neurologist friend and said I have a 34 year old female patient here with possible advanced ALS. I thought he was throwing out "big doctor terms" thought nothing of it. He repeated the physical and I asked him what was wrong. He says you have the Hallmark symptoms of motor neuron disease. I said "what is that?" And he gave a brief description and I left the office thinking no big deal because he was so calm. I found that the neurologist didn't except my health insurance so I went to my primary doc to see if he could guide me to a good neurologist. He looked pale and disappointed, clearing his throat a lot. I said " what's wrong?" He says "you have something very serious" and told me to go to an ALS support website and the story goes on. With a few hard falls in between and a drop foot, I am scared. It has become so noticeable that I can no longer hide the physical parts from family with what ever this is that is taking this body. I have lost so much weight that Im beginning to look like a skeleton from not being able to swallow right. Water has been the biggest challenge for some reason. I had a full blood work up back in March 2012. I have all my records now to bring then to the neurologist. I was negative on Lyme's and other major tests. I'm getting an EMG Tuesday and the lady on the phone registering me asked if I had kids and I told her about my 2 little girls. I started to cry and so did she. She says there is hope... Something inside me says this is different then any other challenge. I know The Lord doesn't give us anything we can't handle. If there's anybody out there that thinks this is what the docs are believing it is, I really need some encouragement, second thoughts, stories. Thank you for listening and I look forward to your thoughts.





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