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JohnWVA

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First off, let me apologize because this will be lengthy. Second off, let me apologize for probably being the 23892783903rd person to come here scared or worried that they have ALS, and partially intruding on the lives of the many of you in this forum who do have this horrible disease.

Let me statt my story 1st by assuring all of you, that my intention here is not to have people tell me I do not have ALS. I simply do not know if I do or not. Now on to my journey.....


This journey begins for me on July 4th of 2008. The only reason the date is so readily remembered by me, is that it began on July 4. I was having a totally normal day, just finished eating dinner. Sitting in front of my computer playing a game. Suddenly, this feeling came over me. The only way I can describe this feeling, is that I felt like my end was at hand. The light around me dimmed. I did not pass out, or lose consciousness, but everything around me just got....foggy. I had this feeling, that I was going to die at any moment. My 70 year old mother, who is left blind from a cerebral aneurism 20 years ago, lives with me. Not wanting to die in her presence, as I knew she would be unable to help me, and would live with the regret of her disability causing her to not be able to help me, I walked outside. I began walking around the neighborhood, sort of half in and half out of consciousness. I had these weird vibrations in my chest. I wouldnt call them palpatations, they were just....vibrations. I really dont recall how it came to be that I went back home, or at what point I realized I was not dying then and there, but I ended up back home. Throughout the rest of the night, the fog...all I can call it is fog, stayed with me. I wasnt unconscious, I was conscious and responsive to the world around me, but the light was very dim, and my peripheral vision was clouded by a fog. I woke the next day, the same way. Everything was dim and foggy. I am a manager at a McDonalds and I went ahead and went to work that night to work the closing shift. As the day drug on, I began to feel slightly better ( I know its weird, but I always feel better at work). By the end of the night, I nearly felt like myself again. I didnt drive myself to work that day, hence my sister had to come and pick me up. On the way home, we got into a little bit of an argument, you know, brother and sister stuff, we always have, and always will. As the argument went on, I began to develop some pains in my chest area. Never having had a heart attack, I was unsure what heart attack pain felt like, so I became concerned. But, I began to notice that the pain was directly related to me moving my right arm. If i raised it over my head, it felt like a muscle pain. I didnt think much of it at the time, I was still mildly concerned about my heart. I was off work the next day, and practically did not get out of bed, I was just so so sleepy and tired, and felt general fatigue, and lightheadedness. I got up the following day, and went to work. I was like a shell of myself. My facial expression was blank, and everyone was concerned about me. About 4 hours into my shift, I had another "feeling" that something bad was happening to me. It was at that moment, I became very concerned about my heart. I decided I was going to the ER. I went to the ER, and they took me in right away because I looked flushed and I told them of my chest pains and lightheadedness. The doctor did a physical exam of me, took some blood, did an EKG, and everything came back clean as a whistle. He said to me "Your symptoms for a healthy man of 37, are not generally that concerning, it is likely you had some sort of a viral infection. " And home I went.

Over the next several days, I didnt feel any better. I had no doctor, because I had NEVER had a health issue of consequence in my adult life. I began getting more and more fatigued, and literally could not sleep...for even one minute. I would lay on my couch, and all of these WEIRD, tingling and numbing sensations would go through my legs and arms. It was primarily my right leg, but it literally did happen everywhere. Even in my head. In this day and age of internet, I got the brilliant idea of looking up my symptoms. After several different tries of googling my symptoms in various word patterns, everything that came back to me was "brain tumor". Im human, so that sent me off into a frenzy. In the meantime, My right arm had developed a more constant sensation, it is kind of a tingly feeling in the tricep. The arm was not weak, it was just that when I moved it, it had this "feeling". Then the twitching began. And it began EVERYWHERE. Legs, Arms, Chest, Abdomen, Neck, Back. The anxiety from the brain tumor scare, caused me to have trouble eating. I literally had to force myself to eat, and it was in small quantities. I often said to people that I had to choke down my food. In truth, I wasnt choking, and wasnt having any difficulty swallowing it, it was just that as I was chewing and swallowin, I didnt WANT to be eating. This went on for the better part of 3 weeks, the whole time I was calling off work every day. In 20 years of employed life, I had missed work ONE day. So for me to miss work, my boss knew I was in bad shape. I went, as far as I can remember, 6 or 7 days with only 2 hours of sleep TOTAL. I was so tired and sleepy, but I could not sleep, because every time I got to the precipis of falling asleep, my left leg would JUMP. And it would wake me up. When I tell you it literally happened every time I got to the relaxed state just before sleep, it would happen, I mean that it happened EVERY time. No matter where I laid, it just kept happening. It was during this time that the strange chest vibrations continued, and they chaned a little. I attained a doctor, and he began the slow process of examining me. I struggled mightily with trying to work to him what the feelings in my chest were. It felt as though ny chest was being "flushed". Like a toilet. I have no other way to describe it. He was puzzled , and I am sure to this day, is uncertain as to what I mean by flushed. The lack of sleep continued as my left leg would not stop jumping. I experimented a little with trying to immobilize the leg so that maybe I could sleep. WHen I did this, and the urge for my leg to jump hit me, the leg would be unable to move, or I would have the muscle exerted so it could not make the jump( if that makes sense to any of you), but when I did this, instead of my leg jumping, this HORRIBLE pain would shoot through my chest, it almost seemed like an electrical shock. It was horribly painful and left my chest burning. Nothing had changed for me for several weeks, as my doc sent me for blood work, and this test and that test, I still barely was getting any sleep, and was not working. And that made things double tough for me, because if I didnt get back to work soon, I would lose my insurance. So, I tried to go to work one day. I got there, and I couldnt do much, I was so tired, and so sleepy, that I just walked around, sat, walked around, sat. I stood up one time, and my chest flushed, and I got a little dizzy. A very wonderful friend of mine, a fellow manager name Tabitha, came back and put her arm around me and said "come with me, we are going to the ER." So, there I was in the middle of getting tests from my doc to begin to figure out what is wronf with me. And making my 2nd ER visit. At this time, I was really scared, more scared than I had ever been at any point in my life. The ER doctor questioned me about my symptoms, I was having difficulty speaking. Not that I couldnt say the words that were coming from my mouth, but I couldnt make up my mind WHAT words I wanted to say. I would start sentences, and stop them, and restart them. I explained to her my fear about a brain tumor. All the numbing and tingling and twitching going on. She was very sympathetic to me, and had a wonderful bedside manner. She decided to give me a brain CAT scan. The scan came back normal. Another EKG, to which she told me I have the EKG of a healthy 12 year old. She then said to me "In the ER, I am not at liberty to diagnose anxiety, but you sir, are a very anxious person. She suggested that the fog I was in peripherally, was caused by an old eyeglass prescription. She advised me to talk to my doctor about anxiety, and get new glasses. Having gotten a clean CAT scan that night in the ER, I walked out of their, not feeling well at all, but feeling relieved that my brain was clean. I even went out to eat, for the 1st time in a long time, and I was HUNGRY. Swallowing food, however, was very difficult for me. I chalked this up to anxiety, and took my time, and ate a pretty good size meal at Perkins. In that 5 week time fram, I had gone from 182 pounds to 153 pounds. Over the next few days, the original symptoms, stayed. Some evern got worse. And once again I became totally unable to sleep. I would cry because I was certain I was dying. I was still completely scared to death that I had a brain tumor. I made the argument to myself that "Sure, anxiety could have cause all of these symptoms AFTER I read about the brain tumor possibility, but would not have caused them BEFORE that, and I had them BEFORE that." I had very little stress in my life. After 4 or 5 days of not being able to sleep again, my sister called my doctor and begged him to see me that day to give me something to make me sleep. He gave me a quick exam, examined the tests from my ER visit, confirmed what the ER doc said, everything was fine will all that. We began to discuss anxiety, I wasnt sold on anxiety, but I trusted in my doctor(as he has been my moms for 20 years), to go through the necessarry steps, and I would do as he instructed. He gave meLexapro for anxiety. And a drug called Restoril to help me sleep. I left my doctors office with a much more upbeat attitude, as he agreed to shedule me for an MRI on my brain so as to put to bed any of these fears of a brain tumor. I felt so good leaving there, that I went home and immeadiately slept for about 8 hours. My leg felt jittery, but it did not jump. I began taking the lexapro, and after a couple weeks, I really did feel pretty good, and started to feel a little bit better every day. The swallowing problems slowly got better, and I was finally able to eat full size meals the way I used to. But....the twitches remained. And they got worse. The numbing and tingling remained, but now were totally secondary to the twitches. As I continued with the lexapro, my outlook became better, the dark fog I was in cleared up. And for the most part, I was back to being me. Or 90% of me. But...the twitches, oh my God, they did not stop, for a while they got much worse. As i began searching the internet for twitches, I , like so many others, came across ALS. While the entire prospect of having ALS, scared me to no end, as it would anyone else, I stayed (because of the Lexapro) upbeat about all of this. I felt no muscle weakness that I could tell. There was nothing I couldnt do that I could do before. Just twitches, all the time. No cramping, just twitches. I made a decision sometime during that time frame, that I may or may not have ALS. But, as the quality of my life at that time was very good, I did not want to know. So I never approached any of this with my doctor. Days went by, the twitching continued. It finally came to were I was taken off the Lexapro. I had very mild withdrawal, some stuttering in the 1st 48 hours, but it went away. The next 2 months went by. Twitching continued. And things just continued status quo. Until about 2 weeks ago. I had a phlegm in my throat, and I could not get rid of it, either by coughing or swalloing. It was annoying, and it was always there. Im not one to live and learn, so I googled the throat phlegm issue. And lo and behold, ALS popped up again. I read about it, and understood that it was caused by thick mucous that your muscles were unable to swallow, and that you could not cough up due to weak muscles. I had gone 8 months with no swallowing issues from the initial difficulty swallowing. So I said to myself, "surely I cant be unable to swallow it because of muscle weakness in my mouth, tongue and throat." I eat great meals, and had regained all of my lost weight, plus 5 pounds. I sat at 190. I really truly felt very good day to day, except the twitching, and now the phlegm. I kept dismissing the phlegm because I had no trouble swallowing, either solids or liquids. Then, last night at work, it happened. I was in mid converation with another manager, and I went to swallow, just a normal swallow, I wasnt drinking anything. And my muscles would NOT swallow. I panicked a little bit, and after a few seconds, and after moaving my tongue around my mouth, I was able to swallow. I went, then to take a drink of coke. Same thing. I didnt have difficulty swallowing it, I didnt choke, it just SAT in my mouth. The muscles would not do what I wanted them to do. Same deal, 5 or 10 seconds later, it was fine. And I swallowed the coke. The whole incident made me WANT to cry, because it renewed all of my ALS fears. And they came over me in an overwhelming moment. I was panicky and jittery the rest of the night, but had no more difficulty swallowing anything. I went to work today, and still no swallowing difficulty. Either with food, or with beverages. Twitches continue. my paranoia is on the verge of renewing. I have made a decision to see about going back on the lexapro 1st. And if the swallowing issue comes back, I will then address it with my doc, and maybe see a neuro. I believe the odds are probably 60-40 that I do have ALS. I also still believe that as long I can live fully day to day, and maintain my active lifestyle that I have right now, I still dont want to KNOW that I have it. I have lost no movement in any limbs. I dont perceive any physical weakness. I really just wanted to share my story with people and get some perspective and opinions from others. I truly do apologize for the ridiculous length of this story, but I felt it important to share as much detail as possible. I know I forgot some things, but I didnt take notes during this time frame, so I draw this off vanilla memories. Thanks you again, for your time and for any comments.
 

Al

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OK John, first thing I'm going to say is forget the 60/40. I would bet 99 to 1 you don't have ALS. A few twitches and thinking you have a swallowing problem every once in a while just doesn't point to ALS. There are a hundred sites out there that might make you think you have ALS, MS, MG, TIA's Parkinsons or whatever. I really think you came off the anxiety meds too soon. I'm no doc but I've seen a lot of stressed out folks here and you seem to fit the bill.

AL.
 

wright

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How on earth did you take all of your signs and symptoms and come-up with ALS . . . and you went from a heart attack to a brain tumor to ALS? You are definitely someone who SHOULD NOT be on the internet. Stop self-diagnosing yourself because you're not even close to being qualified. It appears the only thing you know about ALS is how to spell it.

I know this might sound a bit harsh but some people just need to be handled in that manner . . . and you're one such person. Your symptoms aren't even close to being ALS . . . and quite frankly . . . are more than likely a result of anxiety. Anxiety might not have been the cause of your initial symptoms (although they could have been) but certainly everything else after it. Relax.
 

Zaphoon

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I just have to say, I took one look at the length of this post and my eyes got a hernia.
 

suzannj

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Kim - "and my eyes got a hernia" I'm STILL laughing at that one! :)

John - You must be very worried to have taken such effort in writing such a long post. Listen to Wright and Al. I'm not a CAL or a PAL, but have read and read and read . . . .and read some more, and have to agree with both of these fine gentlemen. Cancel your Forum subscription and forget about ALS.
 

crystalkk

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John,

I know you are scared, but it diesn't sound like ALS to me either (oops you did not want to here that). We are not drs.
but it sounds like stress and anxeity. Try to get that straightened out first and see if your symptoms persist.

When making such a long post you need to make paragraphs and separate it. It is really hard to read that way.

hang in there,
 

brendapals

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John,
Please, please listen to what the forum is telling you! It does NOT sound like ALS, but then again, none of us are YOUR DOCTOR. Get something to control the anxiety and stay off the computer.
-b
 

rose

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Al, and anyone that actually waded throught this....

Kudos to your patience!

John, I hate to tell you this, as you're obviously very worked up, but I could only skim what you wrote. Too much, too close together! But, this should comfort you, because everything about your writing style points to extreme anxiety, which is very treatable.

Please listen to what the others advised you, and for goodness sake, stay off of the internet and consulting Dr Google! (the new terminology is "cyberhcondria", rather than hypochondria, and you have every appearance of being in its clutches!

good luck to you. :smile:
 

Marjorie R. Wilcox

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John. So sorry you have experienced all these things and that you are so fearful of what you might have. Please take a deep breath and purpose in your heart to listen to your doctors. They are the best we have, and if they say you don't have ALS or anything, believe them. GO WITH THE FLOW, instead of sitting on the internet and thinking you have this or that.

I don't encourage you not to post, especially if you need us, but yes, please space your words like I have here.. so we can more easily read it.

Thanks, AL, for letting us see and read it all... and for being gentle. I do agree with all the responses though.
 
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