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Amyotrophic Lateral Sclerosis (ALS) Message Board
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Old 02-16-2013, 10:18 PM   #1
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Question Holding on to hope while holding on to walls.

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.

Last edited by ColorPink; 02-16-2013 at 11:41 PM.

 
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Old 02-17-2013, 05:24 AM   #2
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Re: Holding on to hope while holding on to walls.

Hi. I don't have much to say but I will be praying for you and your health problems. My uncle had ALS years ago and I have some autoimmune thing going on and my 1st thought was ALS. They say no. I hope your diagnosis can be something else that they missed. There are so many diseases that mimic ALS, not just Lyme disease. I hope you will go for a 2nd opinion and find a kind, caring doctor that is not so abrupt. Besides, as you know, you are very young for this disease. God bless you and your children and keep us updated after your emg. There are many kind, loving people on these boards with some helpful information. Reach out to us any time. Linda

 
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Old 02-17-2013, 08:46 PM   #3
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Re: Holding on to hope while holding on to walls.

Thank you for your prayer and support! I will keep you updated on the EMG then I'm off to the ALS specialist soon after. I'm hoping it's something else too! My second Uncle had ALS as well. 2 with Parkensons disease. I'm sorry to hear about the autoimmune thing. Have you ever tested positive for Epstein Barr Virus? I've been in the medical field for some time and done some research on Autoimmune diseases because my mom has suffered for years from a rare type.

 
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Old 02-26-2013, 06:19 AM   #4
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Re: Holding on to hope while holding on to walls.

Colorpink, been thinking of you and if you received any more tests results or diagnosis. Look forward to hearing from you for updates as we are concerned.
Best of luck and hope you are feeling better. Linda

 
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Old 02-26-2013, 11:22 AM   #5
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Re: Holding on to hope while holding on to walls.

Thank you Linda:-)

The EMG/NCT were horrible!! I couldn't walk at all for 2 days. The needles weren't bad but the shocks bruised. I don't know my results but was called and scheduled the day after to get into to neurologists this week. One is the director of the ALS department and another is a motor neuron disease guy. I spoke to the receptionist and she said we have your diagnoses. She said I will get my test results and diagnoses along with a 90 minute evaluation. I don't know if this is good news or bad news. I was originally referred to a lady neurologist, but now they say this director wants to see me because I'm special. She asked if I had any family members or close friends that I felt comfortable coming with me. They suggested that someone came with me.

So I will go for an appointment tomorrow and Thursday. I didn't expect things to go so quickly. I was told originally it takes up to 2 months to get in to the specialists. I'm nervous...;-/

What's your thoughts?

Thank you for checking in:-) I hope all is well with you sweetheart!

 
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