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Author Topic: Worried to death about ALS  (Read 222 times)

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Offline Sunnydays4

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Worried to death about ALS
« on: December 04, 2013, 11:40:29 PM »
I have a neuro appointment tomorrow for an EMG of my mouth/neck...something like that.  I've posted on this problem before but I'm absolutely terrified that tomorrow's the day he'll announce that I have ALS.  For the last YEAR, I've had issues with my speech.  No one else seems to notice but my words feel like they get caught up in my mouth, my chin has a strange muscle ache to it & the muscles under my chin & into my neck are always feeling strained or what I perceive as "weak feeling".  My mouth shakes when I smile for longer than a few seconds & sometimes my chin & lower lip feel shaky.  I'm the Google queen so every time I look up my issues, it points to bublar als.  I'm only 32 but I just don't know what else it could be.  Hoping it's nothing.  :(
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Offline Dmcrae22

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Re: Worried to death about ALS
« Reply #1 on: December 05, 2013, 12:04:46 AM »
I hope you're able to get some rest tonight and are also able to accept the results of the test. I'm 32 as well and getting over ALS fears as well. It took at least 2-3 doctor visits for me to finally accept I didn't a rare neurological disorder. I'm sure, like myself, you've played out the scenario hundreds of times where your fears are confirmed. My suggestion is to also have plan when they tell everything is normal. Best of luck and let us know how it goes.
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Offline Gomubukai

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Re: Worried to death about ALS
« Reply #2 on: December 05, 2013, 12:05:57 AM »
If it was ALS you would definitely notice more than some perceived weakness and difficulty speaking after a whole year. Others would also notice something isn't right by that time.
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Offline Mamapajama

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Re: Worried to death about ALS
« Reply #3 on: December 05, 2013, 04:15:52 AM »
I had a twitch in my hand that really bothered me, you could see the skin indent and pop out. I, like you, googled twitch in hand and ALS started popping up. Just as I was panicking I saw a site for people that googled symptoms like muscle twitching and now they are positive they have it.  The site was very reassuring and went thru what it would happen if you did have it. I stopped thinking about it and twitch is gone. Probably anxiety. I wish I had the link for you but it happened a while ago.
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Offline livelaughlove

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Re: Worried to death about ALS
« Reply #4 on: December 05, 2013, 05:42:40 AM »
Your symptoms are not of ALS at all. I have similar problems, and recently I had a lactulose breath test which i had to push and push to get and it came out positive for SIBO (small bowel bacterial overgrowth). If the overgrowth is from lactobacilli, which it usually is, that can cause a buildup of lactic acid in the body which will cause fasciculations, joint pains, and slurring of words after ingesting high carb/starchy sugary meals. I used to be very ill on and off with no explanations from any doctor and i have seen multiple doctors. I would get these flares of diarrhea about every 4-8 weeks that would last about 3 days and it would be consistency of water upwards of 10- 15 times per day. I had had enough over a year ago and wondered if i had bacterial overgrowth (i work in the medical field) so i put myself on a strict paleo diet for 1 month, eliminating all grains and sugar. Then i just stayed on a high healthy fat, high protein, low starch diet and i have not had any diarrhea or weight loss since. I just had a breath test done last week just to prove my point and it was positive. SO even though i have no gastrointestinal symptoms, i still have it, but my diet are keeping the bacterial counts down low. THe only problem i have now is fasciculations for about 6 months. You can't see them but i feel them all day long nonstop in my face, area around my mouth, thumbs, arms, back along my spine. Some days are worse than others. I think it is from the bacterial overgrowth in my small bowel, i really do. I think it is messing up how i absorb certain nutrients or the bacteria are releasing endotoxins, or as i eat healthy maybe it from when they die off and release endotoxins. I have not started treatment yet, which will be xifaxin 10-14 days followed by a healthy diet indefinitely and avoidance of synthetic sugars and stuff that bacteria like to ferment on. I had an upper endoscopy and my entire small bowel had an odd granular appearance which is uncommon, and the bx came back as lymphocytosis which is indicative of celiac, autoimmune disorder, bacterial overgrowth/stasis, food hypersensitivy, h pylori, or overuse of NSAIDS. I dont use NSAIDS, i was negative  H pylori. My ANA is negative so i don't have an autoimmune disorder. Celiac panel negative (negative DQ2, DQ8) so it is impossible to have celiac (you cannot have celiac without those genes and high TTG IgA/IgG levels). So the only thing left was SIBO and the diet that fixed me proved it, but i wanted to be tested to prove to all those doctors that i was right and educate physicians on this matter, which most know nothing about. I would suggest you change your diet and see if your symptoms improve. Choose healthy whole foods and choose complex carbs, avoid simple carbs. Keep it diverse. Get checked for lymes, and have B-12 and magnesium levels checked as well as D. Drink lots of water and keep hydrated, too. Guarantee you will get better by doing that.
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Offline livelaughlove

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Re: Worried to death about ALS
« Reply #5 on: December 05, 2013, 05:47:27 AM »
By the way i have had that same problem my entire life. Whenever i eat a high carb meal, my speech gets slurred and it happens about 20 minutes after ingestion of carbs. I get a little confused and can't think good when that happens too. It lasts for about an hour and then stops. I think it's from build up of lactobacilli releasing endotoxins and too much hydrogen way too fast.
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Offline DaphneNL

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Re: Worried to death about ALS
« Reply #6 on: December 05, 2013, 11:14:04 AM »
What age are you?
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