A Coworker's Husband: ALS Reality Check

Hello all. Hope you are coping well. Today it was confirmed that a coworker's husband has ALS. I am so profoundly sad for both of them and wish there was a way to help. Sadly, we all know there is little that can be done. For most of us here, that diagnosis is/was our biggest fear. So why is this a reality check? He went from a twitchy (and weak to the point that he was having trouble doing his normal daily stuff) arm to a wheelchair in one year. ONE YEAR! We are all still walking and talking and complaining. He is in a wheelchair and unable to use his hands at all! This is not to scare anyone. I know many read about someone being diagnosed and become filled with panic all over again. I am telling you all this because of how different his symptoms are from ours. It is the difference between a headache and a brain tumor. Please try to accept your diagnosis of BFS. If you have not been diagnosed and still have full use of your body, try to move on. I still struggle with it from time to time, but I have never been so thankful for my basic health as I am right now. Take good care of yourself physically and mentally and remember your condition is (thankfully) benign. And please pray for a cure for ALS.Take care.Becky

You might mention to your coworker about the NP001 trials. It is showing promise. Also, if he is willing to take the risk, there is a group of people over at the ALS TDI forums who are duplicating the NP001 concoction (sodium chlorite) themselves and ingesting it themselves. They appear to be biochemists, at least some of them. And it's showing some success. Their goal is to prolong life until NP001 becomes publicly available. The diff between NP001 and the oral sodium chlorite mainly appears to be just that the NP001 is intravenous. There may be some other differences as well, but the oral SC seems to be working in a decent percentage of people. The preliminary NP001 data seems to indicate pretty powerful improvements, ie, dead limbs working again. The OSC, probably because it's absorbed through the gut, does not seem to be as powerful.I am not advocating that he try this. I'm simply pointing out that some people are doing it. All risks are his own. He should discuss w/ his doctor.

Thanx for the reality check. Did your coworker's hustabnd had any sensory stuff like tingling in arms and painfull muscless or he just twitched and couldn't use the arm any more? I guess his hotspots didn't move around the body either...

HAVING HORRIBLE WORRYING RIGHT NOW!!!! Just had one of my clients tell me here mom died of ALS just this very moment! Her mom thought she was sick but come to find out her throat just wasn't working properly. She said she didn't have twitching, but the funny thing is my client has had twitching for 11 years. The daughter (MY CLIENT) was tested for ALS the genetic test and it was negative. The dr told her 10 years ago she has restless lef syndrom and gave her meds for it and it made the twitching stop. This is how she described it to me, Worms all down her lower legs. My point is I'm scared, the last week I have fealt my throat is smaller like when I talk fast or take a deep breath it feals like the thing hanging down makes a winded noise. I can swallow normal, talk normal, can this be anxiety what I'm experiencing? Has anyone else had the fealing of shallow in your throat? Becky so sorry about the person you know, makes me so sad to hear of more people getting this awful disease. I'm feel so bummed today Ashley

Ashley,You are clearly brimming with anxiety. It shows up really clear in your post. You are FINE. Relax. Breathe. This is your mind playing tricks on you. Deep down, you know it. It's made worse by the fact that you got this bad news about your friend's mom. Well, your friend's mom has nothing to do with you. Breathe deep, exhale, count to 10, tell yourself you are fine (because you are), and move on.

You can smell anxiety of your post!!! Anxiety makes you choke!I would never think in my country that has 20 ALS patients a year (no, that is no mistake, so small country!) I would meet a guy who's wife's ant had ALS :-& Got me scared too that day. But she doesn't have anything to do with me. It's not a vision or something

To clarify, his twitches were more like tiny, constant muscle jumps. It was localized to each muscle as they began to show weakness. In the beginning, that was coupled with regular, painful muscle cramping. He has had no sensory symptoms, pain, or buzzing. He has had no trouble at all with speech or swallowing. He experienced foot drop soon after his hand became weak. That is all I know. It was fast and relentless. No weakness one day, strength the next. I will admit, just hearing about this makes my anxiety flare up. It's terrible and I start to imagine all sorts of things that probably aren't really happening to my body. I and the rest of the anxious here need to remember that ALS isn't going to sneak up on us.Sorry if this scares anyone. It is not my intent. Just the opposite.

I'll admit, this made me nervous too.Last night, my wife told me that a new friend's mom just died of ALS. There are people out there with it. I guess I'll put my anxiety into donating some money towards research. Unless I have real weakness, I'm not going to worry about it. <--- I tell myself!

That's terrible news and sorry for your friends husband and family. I'm sure its some of our natural reaction to see an increase in anxiety when we hear stories like this but for those of you that may be concerned, please see the main reason for Becky's post as this is a reality check for us that we don't have ALS. Remember this poor man went from localized twitching and weakness to a wheel chair in one year! ALS just doesn't present itself in the way that we all experience our twitching, buzzing, cramping, ect.....Mike

I have small muscle jumps but every day on different place (except foot). Can somebody explain to me what is cramping? Is this pain that gets to you when you rest of is it pain when you use the muscle? If I don't move I have no pain, as start as I stretch the muscle it hurts. But this is no cramp, is it?

For any of us in the early stages of BFS it is completely normal and expected to become anxious after reading a post like this. However, I think these stories are great because they bring up the scary subject of ALS in a way that sheds light on the truth. Too often posts from scared twitchers about ALS are ridden with half-truths and fuzzy information which spread fear like wildfire for no reason. I had a coworker who was diagnosed and then died from ALS several years back, and although I didn’t get a Q/A from her about all her symptoms it was OBVIOUS she had something wrong in so many ways. Everything from the way she talked to her physical build just stood out to anyone she met. To think that at one time I thought I had her disease makes me feel quite pathetic actually. There’s a reason why experienced neuros say they can almost always know an ALS case within the first few minutes of meeting them. Our symptoms aren’t even in the same ballpark as those poor souls. Not even close.