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Tweeka

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Hi and first, thank you to everyone for having me on this forum. I have been researching ALS for some worrying symptoms I have had and I must admit that everything I have read on the internet has scared me to wits end. I am on the verge of a nervous breakdown because of all of this and so I am posting this in the hopes that maybe some of my questions will be answered. I have always had severe clinical major depression (severe for the last 3 years). Along with this, I also have severe anxiety. Not quite two years ago, I started getting the little twitches (or spasms) all over. Here we are now and I have them much more noticeably everywhere. I have talked to 2 doctors and a neurologist and have even specifically said I knew I had ALS and I keep being told this is all my anxiety. So I started my own research and now live in fear and tears everyday that this is what is wrong with me. So now here I am and I have a new symptom. I started feeling like its takes a little extra effort to get my words out and I feel like I have a weird sensation at the back of my mouth. Each day (but not all day long) i experience chokey feeling at the back of my throat. Hard to explain how it feels and it does not effect my eating (recently I had barium swallow which showed nothing except a hiatal hernia). I have turned to alcohol alot lately because it makes my symptoms seem to get better though as soon as I stop drinking, they come right back. I am so anxious about what could be wrong that I am ceasing to exist it seems. I have two very beautiful, young children and am 32 years old and am so scared I wont be here for them. My doctors keep telling me I jus need to take my medicines for depression and anxiety but I am so scared something will be missed because of my anxiety and depression issues. The symptoms I have feel very real to me. Does any of this sound like ALS? 'My heart goes out to everyone out there with this terrible illness ...
 

ottawa girl

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This does NOT sound at all like ALS. Your doctors have told you this. Why don't you believe them?

If you believe nothing else: I've been occasionally drunk as a skunk. My symptoms don't go away. So if only on that basis - trust me - you don't have ALS.

Take your meds, stop drinking, hold the little faces of your children in your hands, gaze into their eyes and look for their future. Do you want them to grow up in a happy healthy home with a Mom who is wholly present? Do you want them to become loving self reliant adults? If so, I repeat, take your meds, stop drinking and seek counselling.

Only you can get you fixed. I hope you do.
 

crosado8

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Tweeka, are you on any meds? Do you have thyroid issues? Did the neuro do any test such as EMG'S or strength test? Anixety can really play crazy tricks on the body! I started twitching all over my body a little over a year ago and i jumped up in such fear! My twitches started all over my body kinda like it was running throughout my entire body at a fast pace and speed well that part finally calmed down maybe after a month BUT the twitches never stop they are still off and on all throughout my body but mostly mine legs and the little spasms as well. Mine started two weeks after I had oral surgery and to this day have not completely gone away. Some days or worse than others. NOW not even a month after my surgery my husband comes down with Bulbar ALS and he first noticed weakness in his hands however we did not know that before that the spasticity he was experiencing in his tummy and weight loss was already the beginning of his ALS. Now My husband had the twitches also especially in his upper arms-chest and so forth but his was fleeting twitches like they would go nonstop very rapidly like a constant heartbeat you could see these very easily with your eyes. My daughter noticed them first she said mom you see dads arm and I looked and the twitches was fleeting very rapidly and non stop! I still worry myself about my twitches which like I said that started 2 weeks after my oral surgery. But mine are different from my husband's . Now that my husband muscles have all atrophy his muscle twitching is not as bad as from the very beginning! He is now on a vent /feeding tube/cannot speak and hasn't in over a year . his body/diaphragm and all is paralyzed he can only move his eyes. Please feel free to ask me anything you like I will be more than happy to try and answer them. I KNOW the constant fear of ALS and those blasted twitches. I also have the anxiety REALLY bad especially after the fact my husband came down with ALS Feb 2012. He has a real progressive form in less than 4 months he was on vent. One thing for sure you have got to get the anxiety under control and try distressing things. Do you take hormone pills? Hormone imbalances will do those crazy twitching and weird body stuff. If you need to ask me any questions send to my private email cause I do not sign into the forum that often.
Blessings, Carolyn
 

vickim

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I second Elaine. Your babies need you, a mom in the present and tending to their needs. Holy cow, drinking never solves anything. Seek some psychiatric help. Don't let the anxiety and fears take control of you. Take the reins and take charge. Be brave for your babies if not for yourself. I wish you peace.
 

Tweeka

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Thank you everyone for your feedback. I understand what my doctors are telling me but my concern here is that these spasms are none stop... they happen all the time even at night while I am resting yet noons has felt it necessary to do any type of testing (like EMG testing) other than a physical exam. I have been trying to put my heart and mind at piece and jus stop trying to pay attention to them but I find I get so exhausted and overcome with worry that I only manage to make it thru half the day staying steadfast in the notion that everything is okay. I have not had any weakness, weigh lossy or any noticeable atrophies that I am aware of but from what I have read ALS does not always start this way. I also find myself constant wondering if I am jus on a ticking time clock before symptoms like this set in. I wish I had never had the bright ides to google anything because this has jus been the absolute worst fear I have ever encountered. Sometimes I do get feelings like my skin may tingle in some areas like my face or feel weird !"$ and I will get the twitches in my eyelids even. I am jus not completely convinced it is not something more sinister. I do recognize that morning times are when I feel my best after I have slept. I notice that i dont have as many spasms, my talkimg seems to be pretty good then, and i jus feel better oin general. Stress, no sleep, and caffeine do tend to make all of these things much worse. I have Zoloft and Xanax to take and am hoping these things to will help and not mask anything potentially serious going on here. Thanks again to everyone who has taken their time to listen to my concerns and offer feedback, as I truly understand how precious life truly is. God bless each and everyone.
 

Grateful

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Tweeka

Fear causes a vast array of horrendous symptoms; I'm doing pulmonary rehab at the moment and I've been quite startled by some of the symptoms which the specialists have explained to us which are rooted in fear. I thought I understood it quite well before, but I've learned that there's a lot more to it than I realised.

You are concerned that you have not had an EMG; you are overlooking the fact that your doctors have learned a great deal about you from your physical exams. They are not dismissing your concerns because of your pre-existing conditions; they are dismissing them because nothing about your physical examinations suggests that you have ALS.

If you look at the stickies you will see that there are a number of signs of ALS which doctors will find on a physical examination; they haven't found them in you.

You've had a barium swallow which would have shown abnormalities if you had bulbar ALS affecting your swallowing; it hasn't shown those abnormalities.

Finally, please bear in mind that you do have something serious going on; you have severe depression, now coupled with severe anxiety. That is a potentially life threatening condition and your doctors are worried about you for that very good reason.

I'm not a doctor but I'm worried because your medications combined with alcohol could kill you a great deal faster than ALS could, so please junk the booze and go back to your doctors to see if your medications need to be changed to help you cope with this.

Tell them that you have been drinking so they know that you have resorted to self medication of a particularly dangerous kind; it will help them understand that your state of health has deteriorated, and they need to review not only the medications but consider psychiatric therapy to support you to get through this.

I will be keeping my fingers crossed for you, and I wish you luck!
 
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