My Journey to 42: A Story

Highlights Only
S

skeeterdad

New member
Hello everyone! Like a lot of people on this board, I have a story that has brought me to the point. While it is long, I'm hoping you'll take the time to read it and share your thoughts and experiences with me!I'm a 42 year old man, I have a beautiful wife that I've been married to for 4 years and we have a 17 month old daughter, that means the world to me!My "story" started back in August when I had some unexplained rectal bleeding. After a few visits to the doctors office, my doctor agreed to order a colonoscopy. While this was going on, I realized I hadn't taken care of my "family business" (life insurance, etc) and knew that if I was found to have colon cancer, I would leave my young wife and daughter in a terrible situation. Immediately, my mind started running wild with the "worst case scenario" and I was a mess. A few days before the colonoscopy, I started experiencing, headaches, severe neck and back pain, blurred vision, etc.. My doctor attributed this to stress and dismissed things. The colonoscopy came and went, all with a clear bill of health. Thank goodness. However, the headaches, blurred vision, head & back aches continued. I was still quite stressed about what almost happened, the thought of dying, leaving my family "without" and MOST importantly, my young daughter never knowing WHO I am/was devastating. It consumed my every waking moment. While I did feel some relief from the "good news" of not having colon cancer, my wouldn't "loosen" up and go back to "normal". So I focused on getting my life insurance in place and making sure my family would be taken care of in the future. About a week later, I was sitting on the couch watching tv and something came on about ALS. I was bored, the family was asleep, so I googled it (not knowing much about it). I looked at the basic symptoms, etc and went back to watching the tv. The following Sunday, I was sitting on my couch and my inner foot started to "twitch" and it wouldn't stop. The next day I began having "twitching" all over my body (calf, quads, etc..). I immediately went to ALS! I started feeling like I was in a "haze" and generally felt "bad". After a week or so of this, I had worked myself into a very bad place. I was having trouble grasping things, felt very uneasy when walking (off balance), but never to the point of falling. I set up an ophthalmologist appt and everything checked out perfect with my eyes. My next step was to set up an appt with my family physician. She told me I was "crazy" and was "stressing out". She referred me to a chiropractor with a different technique and an orthopedic background. I have seen him about 8 times and while the shoulder tension and back pain has subsided, the neck is still sore and the "twitching" is still going on.I again called my physician and she referred me to a neurologist. I met with the neurologist and he ran the battery of in office tests on me. He said he wanted to be thorough and make sure we covered all our bases. Before I left his office that day, they took 15 vials of blood, they scheduled an EMG (which is scheduled for 12/15/11) and scans of my head, neck and chest (scheduled for 12/19/11). To date, my neuro told me all my labs look very good, with the exception of a slightly low vitaminD result. I'm not sure how I feel about that? In my head, it tells me there are only "bad things" that can come back at this point.As I type this post, my fingers are quivering and my "fear" of what some people on this blog call "the big ugly" or "the big nasty" is out of control. I have been experiencing "swallowing problems" in the last couple days (or have I?), I've also been coughing a little lately, which are both things I've been told recently are things to look for.In the end, I wake up every day and the first thought in my head, is that I'm dying. I'm looking for signs constantly and I KNOW this isn't healthy! I feel so bad for my wife and family, because, I've been walking around "depressed" about something that I don't even know I have for sure? The tests on Friday and Monday will help shed some light on things, but the fear is unbearable!Thanks for taking the time to read my post, I truly am appreciative of any and all feedback or thoughts!Scaredyoungdad
 
Everything that you report is consistent with anxiety and BFS. Low vitamin D level is common and irrelevant to the symptoms that you describe.
 
HelloSorry to hear about the hell you are going through- many of us on here have been through the same- so we can relate. The first time you hear about ALS is terrifying, I remember it well. But everything you have described sounds like BFS- honestly. Your neuro found no weakness at your exam, which you would have if the twitching were caused by ALS. Your symptoms are heightened by anxiety and terror of the nasty. Your EMG is scheduled for tomorrow and this will reassure you- I'm certain of it. It will take you some time to recognise that your symptoms are benign, but you will, trust your doctors and you'll be fine. We are all here for you :)Yasmin x
 
While I understand you are feeling scared, you really have nothing to worry. You will have a clean EMG tomorrow and should never look back….the bottom line is that if you have BFS, you will continue to twitch like the rest of us, perhaps forever. Nevertheless, you will be a free man tomorrow. Happy holidays!
 
I totally understand where you're coming from when you say that you wake up every day immediately thinking that you're dying. I've been there for nearly 2.5 years. Anyhow, I agree with Johnny, as I usually do; it's a boring BFS case.As a young mother myself, I think that being a new parent can trigger all of this. The happiness and joy that your children bring you is overwhelming. Your life no longer belongs to yourself and instead, you're total existence is for that kid. My first panic attack happened within months of my first baby being born. Googling is NEVER a good idea...once you learn about an illness, you develop those symptoms.Good luck with all your tests, although I am quite certain that you'll be just fine.
 
You are a little special. Most of us twitched and googled it, but you actually didn't twitch and googled ALS and started to twitch. That just makes me realize how powerfull "weapon" a human mind is. Of course you can not get ALS by wathing it on a TV, you know that ;) You are lucky to get the head, neck and chest scans and so fast, I have quite more symptoms and my doctor wouldn't even consider this tests.You did not tell how the neurological examination was? I guess he didn't find anything. As I said, you won't get ALS if you see it on TV and got so scared to start twitching ;)
 
It might not make you feel any better but everyone on this Board has been exactly where you are now. High anxiety and just overall fear. I had so many tests done to find out what was wrong with me. MRI, Catscans, every blood test known to man, EMG. My doctor joked that I had the million dollar workup. The thing was everything came back negative. I had twitching, tremors, muscle aches, finger numbness and a whole host of digestive issues. This is a very tough disorder to deal with on an emotional level, but I have been getting better. The first thing you have to realize is that everything is going to be okay. It is a benign condition and over time you will learn to deal with it.
 
A very large number of people on this site had BFS start as a result of digestive issues (me included). If you digestive system was out of whack because maybe you had a virus or something it can cause a whole host of problems.
 
PLEASE focus on this sentance: "if this were my personal EMG, I would be pleased with the results".Do not look further! Doctor will not tell you 100% anything, but it rules ALS out for 99.999% and ALS is rare to begin with. You have a more chance to be hit of a meteorit today that you have ALS. And all in all you begin having symptoms after reading about it. That makes me realise although my first twitch was "real", after reading about ALS I could also twitch just because I am so scared :( Thank you for your story, it really put a perspective to me what a scared mind can do to one... I always thought this is impossible but after all, women who things she is pregnant can get pregnant stomach, milk etc...
 
"Obviously, that was good news and made me feel better for a minute. Then he went into his "doctor speak" and said....."testing for ALS isn't like testing for AIDS/HIV, there is no definitive test, so it's not black and white". At that moment, I wanted to puke, because all the doubts/fear/anxiety came rushing back into me! "The neuro is correct, testing for ALS isn't definitive like testing for AIDS, etc., but why should that matter?1. Everyone here who also has benign twitching has been "cleared" by the same tests. You are in good company.2. Many people here with the exact same symptoms didn't even GET an EMG. Clinical exam is way more important.3. Your symptoms from the start preclude ALS from being the culprit, so all of this is irrelevent. Get every test in the book and overanalyze the ambiguous results all you want, but it ain't gonna give you a disease you clearly don't have. 4. The saga will continue for as long as you let it.
 

Users who are viewing this thread

Total: 1 (members: 0, guests: 1)
Back
Top