NCGIRL
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  • Merry Christmas to you and your family as well. I will keep you in my prayers!

    Stay strong and keep the faith!
    I will say that from what I know from talking to the staff and some other patients gastro intestinal issues seems to be the #1 side effect. They will adjust the medication if necessary.
    I will Sweets! I wish I could get in on that trial. Did you see Ted's article? He's doing well with Stem Cell Treatments! Good luck Lady Poo!!
    Yes I do have to take them...They mess with my stomach sometimes and occassionally cause gastro intesstinal issues other then that it has not caused me any issues. I am happy to help and talk anytime. Please never hesitate. We are all in this together!
    It is my pleasure to help answer questions. Prior to my surgery I used a cane, was easily fatigued, had lost strength in my limbs.
    I had 10 injections into the lumbar region of my spine. Yes post surgery for a couple of days was painful but you are in a hospital and they give you pain medication etc. My surgery was on a Wednesday and I went home on Sunday which has been typical.
    Since the surgery I have stopped using a cane and gradually gained back strength in my limbs. I must stress that right now I am viewed as a medical outlier. I still have ALS.
    If the only reason you do it is you think you will have the same results as me, then you are doing it for the wrong reason.I hope and pray that everyone has the same results as me, but you must do it for the right reasons and be realistic that if you decide to do it you are helping the greater good but perhaps not yourself.

    Most importantly, you are correct, I have been very blessed!
    Feel free to ask any questions!
    Sarah,
    I to got out of a crappy marriage about 6 years ago and I'm thankful to God that I did. I'm married to the man I should have been married to all along and he is taking the best care of me. If I was still married to my ex I would be miserable! Yes things does work out in the end. You take care too :)
    Hey Donna, I know what you mean about your mind playing tricks on you! I thought that was what was happening to me too with the swallowing/eating issues, and even told the speech pathologist that when I went in for the modified barium swallow. But nope, it's the real deal, so you might want to have the checked out (my MBS was scheduled as a "base line" test, but good thing I had it when I did). As for being alone, yeah, that sucks in some ways, but really, THANK GOD I got out of a yucky marriage before all this came about! It would really really suck far worse to be stuck with the ex through all this LOL! Anyways, things will work out somehow. They always do. I quit planning and trying so hard for things years ago. When something is supposed to happen, it does, so why fight it? Just enjoy the ride. So as crappy as ALS is, (quoting an awesome song written by Snuzz for pALS Tim LaFollette) "something beautiful will come out of this." Take care. ~ Sarah
    I developed foot drop on the right in summer of 2010... but in hindsight I was having problems playing piano with my right hand that previous winter. Things just kept going downhill from there and the left hand and arm starting having probs too. At this point I can still walk with a KAFO, but I can just barely move my right toes and foot, and my right hand is pretty worthless now. Left hand is getting clumsy very rapidly, so not sure how much longer I can hold out with teaching and living alone. I've also got bulbar symptoms... trouble chewing, making a bolus, incomplete swallow, and some early speech issues. Glad you were able to get an answer quickly. Knowing this is what I had in June, yet no one making it "official" and starting Riluzole and some therapy until November was just downright ridiculous! Are you taking Riluzole?
    They didn't seem to concerned with my age. The symptoms I have pretty much confirmed it for the 3 different doctors I seen at the ALS clinic at Wake Forest in Winston Salem. Yeah being only in my 30's isn't the common age for having this. What are your symptoms that you started with and what is your symptoms now?
    Hi Sarah,
    Sorry to hear your dealing with this awful disease too and younger than I am. My diagnosis went pretty quick. I've read alot about the process of being diagnosed and some bad stories of it taking years to get a diagnois. That wasn't the case for me. When I finally decided to go to my doctor with my symptoms she did go the vitamin deficiency route but only lasted a month or so and she went ahead and sent me to a neurologist and he only did one EMG test and 3 MRI's and then sent me on to a neurologist that deals with motor neurone disease. So I started in March and ended up with a diagnois in October of this year.
    Hi, and welcome! I'm a newbie too, and still figuring all this stuff out here on the forum. Anyways... I'm mostly writing because your diagnosis "quest" is so similar to mine. I also ended up on the "it's a Vitamin D deficiency" route for awhile. I've not come across anyone else who was told that too and then ended up having ALS. Crazy! I also had a hard time getting the doctors to commit to ALS so I could know what I was dealing with and take appropriate actions. But after hearing from two ALS specialists "I'm pretty sure it's ALS but you're so young I hate to call it that," it was almost a relief when the third finally did what the first two wouldn't do simply because of age (I'm 32). Did you run into anything like that too? Take care! ~ Sarah
    The Smokies are gorgeous too. I don't blame him. Give me a shout if you get out this way! ;)
    Lol most of mine are in my closet.. And you should join in, the tea thread is a pick me up mostly, and we would love for you to join in. Take care of yourself.
    Would love to see some of yours sometime, and thanks for the compliment. Feel free to join in on any of the threads, and join us for tea too:)
    Hi there! I'm sorry for your diagnosis but there really are worse things, believe it or not!
    I made the same trip that you did before we moved here almost 10 years ago. Ouray is spectacular! We love it here and moved to Loveland to be closer to RMNP! Still go camping there from time to time. Next time you visit lets meet for dinner or something! :)
    Hugs,
    Marta
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