Atsugi

Hey mike I don't mean to bother you this afternoon. I went and saw my PCP and my CPK was 331. I freaked out l, it's been hard on me mentally . I brought compression socks for my legs and they feel 95% better with them on. If I had true ALS would the socks make a difference? I still get burning but the socks eliminate the fatigue. Thank you mike have a blessed day

Hi Mike,
How are things going for you? I just logged on and saw the post about Barbie's husband. Just breaks my heart. My husband even though we are separated is driving me and the kids to Texas over the Columbus day weekend to visit my dad. The kids have a four day weekend off from school. The twins are seniors and getting really far behind in their school work so it's real hard for them to go unless it's over a holiday. I'm trying to get there more frequently now since he could take a major nose dive anytime. I call him at least once a day if not twice. Hope you are doing ok. Hugs, Kim

I thought creating a second thread was against the rules, and my first one was closed.

Hi Mike, I'm very sorry to bother you, don't rush to answer this if you're busy. So, I had my EMG of both legs, and the doctor who did it was able to tell me immediately after that it was perfectly normal. However, the thing that's been bothering me, is that the same night after the EMG the twitching just exploded, before it I had a couple of days with little to no twitching. Also, I've had a nearly continuous twitching in mainly one spot in my right thigh for 4 days now, and it worries me because it's constant in one spot (which I read is typical of ALS) and because the area with most twitching has spread up the leg (which I read is also typical of ALS). Lately I've also had twitching in my right hand/arm quite a lot (but not as much as the legs) and I can't force the final third of my right ring finger straight if I hold it down gently with the other hand. My dad says it's nothing to worry about and that he has the same thing, but it's still weakness if I'm not mistaken.

Hi Mike, in your experiences have you seen or heard of muscle twitching being an early symptom of als. I have had it for 2 months mainly in my legs and calves. I get them the minute I get up and move around in the morning and I get them throughout the day and when I lay down at night to sleep. I have had the muscle twitching in my arms, forearms, stomach, and even shoulder blade areas. I have been taking anti anxiety medication called xanax, don't know if that has anything to do with it. What are your thoughts? I really do appreciate and thank you again for your time.

That's a logical question. As rare as this is I believe someone like yourself has a lot more exposure to people with the onset of this disease than a neurologist who may see it on a rare occasion. If you think my last set of symptoms I mentioned in my message are irrelevant to this and I'm overly paranoid I can accept candidness too. And please forgive me if I'm out of line by the continual messages. Your helpfulness has been so appreciated Mike please know that.

Hell Atsugi. I'm so sorry to keep bothering you but I'm a nervous wreck. I've been doing moderate exercise such as walking lunges and I've had continual tightness in my right quad muscle and can't seem to stretch it out or loosen it. Left muscle is fine. The more I walk the tighter it gets. I guess it's been ongoing for almost a month. I saw a neurologist of 30 years and he did a thorough exam on me which involved a lot of strength testing I guess you would say. His opinion was I don't have a hint of als and no further testing is necessary. Of course the muscle tightness in my quad and the continued twitching of my muscles mainly in legs and calves daily, but also in my forearms, biceps, triceps, chest, back, and everywhere else periodically are driving me crazy. Based on your knowledge is isolated muscle tightness along with the continued twitching something you feel should be concerning even after what the neurologist told me? Thanks again for your continued support. Royce

Hi Mike, I'm so sorry for bothering you, but my symptoms are progressing to the point I'm getting very concerned and a bit scared. Just some info to this point. I have been to the doctor and he did an mri and said you don't have als. He said you would see signs in an mri and of course I have read that an emg is the best test. He says it's probably carpal tunnel. I want to believe him, but my biggest concern is that I noticed that my right thumb pad muscle has become smaller and less meaty than the left or wasting possibly? This is the hand I have been having trouble with using. I haven't completely loss the ability to use it, but things like writing or using a stapler has become more increasingly difficult. I can still pick up things and I still have some grip strength although I feel fatigue in forearm and this thumb muscle when using my hand.

2nd page. This has progressed over the last 2-3 weeks. Also I have noticed only my right leg muscles tighten up easily . I have bodywide twitching including the problem hand. As I mentioned before I do have periodic numbness and tingling in my hand and fingers which I keep reminding myself is not a sign of als, but the concern I cannot get past or overlook, is the muscle pad below the thumb and index finger that to me clearly has lost some size compared to the left thumb muscle. So of course I'm thinking I have lost some use of a muscle in my hand or thumb area that is causing the difficulty in using my hand. Does any of these new details change your previous opinion on my condition? I'm currently seeing a psychologist for the anxiety in worrying about this. Thank you so much for your time and compassionate spirit. Again, I'm very grateful for your honest and candid advice and opinion. Hope to hear from you soon. Royce in Roseville

Thanks, Mike. Your time, insight and way with words are invaluable. Your comment about children, it hit home.

I hope we never talk again and please know the world needs more folks like yourself.

Mark

Hi Mike, sorry to bother you, but I posted a second thread and was hoping you could respond to it. I read you preferred to respond in the community. Take care. Royce

Hi Mike

I am doing my best to stay off this site, as I respect the hell out of the contributors here and the LAST thing I want to do is waste anyone's time. I saw the guy last night who just kept at it and at it. But I have come back because I posed a question and respect your feedback and honestly am just waiting to hear back so I can block this site from my internet browser and deal w/ my health anxiety. So if you have the time to respond in any manner, I would appreciate it. I am hoping you tell me to take a hike like many others.

Thanks

Mark

Hey sorry wasn't trying to offend you or anyone else and I really appreciate your responses so you really think it's anxiety related

ok just did

No clinical weakness to speak of (I can button shirts, pick up cups, carried some big suitcases, etc), but I perceive some weakness because it kind of burns and obviously is the focus of my attention. As I type this, I don't feel any pain or have issues, other than my pinky finger seems to not be as involved (but I don't have perfect typing skills and really only use the pinky to hit enter - again, something I never thought about until now). The pinky still bends and functions.

What does this sound like to you? I have a hard time believing that these "physical" appearance changes could appear so quick, especially considering nothing is "failing" (in like 10-14 days).

I saw your response to Royce and that peaked my interest into your thoughts.