Strange symptoms

[EarthlingOne]

I want to preface my first post here to say that my concern has led me to investigate about ALS in a way that makes me feel a deep sympathy for everyone affected by ALS (whether in his/her own flesh, or through a family member.) I also want to help those who make this forum possible.

I will make my post as short and to the point as possible. About 10 days ago I noticed my right thumb twitching on its own, which I have never felt before. I dismissed it as a simple transitory twitch, but it has been persisting (more or less) for the past 10 days.

The pattern is: Sometimes isolated twitches, sometimes a cluster of twitches in fast succession. I actually made a video of it yesterday. This can happen often (every few minutes) for a couple of hours, or stop for 16 hours. Sometimes it happens in the morning, sometimes when I am in bed, and sometimes at night. The twitches are localized (and thus my concern.)

In addition, I realized in retrospect that about 2 weeks ago, as I was getting out of my car and grabbed my keys, my pinky and ring finger were stiff, and the hand was contorted. It was like a painless cramp (if that makes sense.) I straightened the fingers with my other hand and that was that. My mobility wasn't affected, and everything was fine. But just last night it happened again (with a little less intensity.) Again, it was like a painless cramp. I had no control of the fingers, and upon straightening them up with my other hand everything was fine.

I have no other symptoms (no weakness, no muscle wasting that I can detect, etc.)

I realize that ALS is an infrequent diagnosis, but due to the severity of the disease and the fact I am naturally somewhat of a hypocondriac, you can imagine my state of anxiousness at the moment.

Could a pinched nerve possibly do something like this? Because I do remember about 3 weeks back waking up with a very sore neck from sleeping in a bad posture.

Thank you for your patience in reading my post, and best wishes.

R.J.

 

[KarenNWendyn]

Please read this which will hopefully answer many of your questions: https://www.alsforums.com/forum/do-...-common-concerns-about-possible-symptoms.html

You’re reporting symptoms coming on over the last couple weeks or so. You’re describing twitching but no failure (failure would be like inability to pick up small objects, turn a key or fasten buttons).

None of what you describe suggests ALS.

ALS comes on insidiously, often over months. ALS is about failing, not feeling. Twitching is common, nonspecific, and meaningless in the absence of muscle function failure.

Most likely your symptoms represent a localized problem. See your doctor if you remain concerned.

 

[EarthlingOne]

Thank you for your answer, I appreciate it. The reason why I am concerned is because of the localized nature of the fasciculations. One of the first things I read about the distinction between BFS and ALS is that in BFS the fasciculations seem to be more generalized, whereas in ALS they are localized. I know that BFS and ALS are not the only two things that can cause the twitches, but this distinction is enough to make me worry.

The other two reasons I am worried are the strange "painless cramps" and the fact that twitching seems to present itself in some patients before any other symptom of ALS (based on my investigation, and despite the prevailing notion.)

Again, thank you for your kind answer. Unfortunately, for personal circumsntances, I am unable to receive care from a doctor because I am uninsured and healthcare is beyond my means at the moment, so I'm somewhat trying to reassure myself that maybe this is not actually ALS, even if it is very concerning to me.

And I'm sorry, I didn't mean to be callous. I see you were diagnosed in July of 2017. I hope you are doing reasonably well, and I thank you again for so graciously using your time and your effort to help other people who might actually not have ALS. Thank you for your kindness.

 

[ShiftKicker]

It sounds like you've done a fair amount of deep research on ALS. Your first stop, however, should be with a doctor if you are very concerned with your twitching and stated painless cramps. This forum can not take the place of an actual medical professional. The people here can answer a few questions, but once answered, folks are expected to seek in person care if they are still worried and can't gain reassurance from the efforts of those here.

I understand there is an issue with insurance coverage- however if your concerns are such that you are doing such extensive research and are posting in a forum that exists to support people with a terminal disease or those caring for them, it is an issue that you must address. It is not ALS that should be your focus though- please re-read the post link Karen has provided you to reassure yourself. There seems to be no further reason for you to dwell on a board for folks with ALS. There are so many reasons for twitching and pulling/cramping- perhaps a physiotherapist would be your next step, should this continue to annoy you.

 

[lgelb]

RJ,

SF has free clinics. You can get your baseline strength checked. Whether you were seeing a doc at a free clinic or with insurance, I wouldn't expect in-depth investigation of stiff fingers and twitches of ~2 weeks duration.

I realize this is very real and disturbing to you, but consider this:

Nothing else you have said or think you have read resembles a reason for concern in re ALS in yourself. You acknowledge you are a hypochondriac, so maybe that is something to address with community resources as well. Health anxiety only degrades the quality of your life.

Best,
Laurie

 

[EarthlingOne]

Thank you, ShiftKicker, for taking the time to respond and for giving me some perspective also. I do understand that this forum can't provide medical advice, and that any opinion from any forum member, however well intentioned, is just that. I guess I was seeking some reassurance maybe, as upon being faced with these strange symptoms I was very worried.

It is very noble and kind that folks like you, KarenNWendyn and ♥ lgelb put the interest and effort to help people in distress even when it's unlikely their fears are founded in reality.

I understand I need to address this. I am a little more calm now, and think that perhaps I have some other issue (maybe a pinched nerve?) The symptoms have subsided in the past couple of days to be much less noticeable, and I've also noticed some slight tingling and numbness, also in my back (the part in my back is nothing new, but it is a function of my mid term habits regarding physical activity.

All this looking into ALS has made me very aware of it, and of its nature, and although I haven't suffered it (nor do I hope to,) it has made me in at least a little portion understand what people who suffer through it must feel like. I don't mean to be presumptuous, just saying that I do feel for people who actually are diagnosed with ALS. Because of this, it has put many questions in my mind: Are there any potential causes we are missing in this age of Big Data that might be determined through a large scale study? Such as: Is there any link between strenuous exercise and the onset of ALS? Any dietary risks? Is generalized diffuse inflamation a precursor to ALS? Extended lack of sleep? Other? Why is it not possible to stimulate the muscles through external means to fight atrophy in some way? At least an electronic way to exercise the breathing muscles?

I have only been looking into this for a few days, but it boggles the mind that there are no responses/solutions to ALS. I understand that it is a complex problem, but still. I do think there has to be some solution, and I don't know how far away it will be. I don't know if it will be genetically engineered/modified cells or nanotechnology (synthetic neurons) or something like that, but this problem is too dramatic for an advanced civilization to not do something about it.

So I was wondering if I can still be in the forum and ask some questions/interact with people. Just to learn ot try to find out things.

Anyway, thank you for your help, I really appreciate it.

 

[EarthlingOne]

Hi Laurie,

I am sorry you lost a loved one to ALS, and I thank you for your commitment to help people going through this situation. And thank you for helping me too. It makes me feel a little guilty that I (and people like I) which in a strict probabilistic sense are likely not suffering ALS take time from you. Thank you, anyway. Just thinking you might have ALS is very distressful I suppose.

Yes, you are right that health anxiety does degrade your quality of life. Paradoxically, because at the moment it seems that ALS must just go through its course (praying this will change soon!) at least I don't have the anxiety associated with feeling I should do something which I'm not doing. But I do feel a little more calm now for the reasons I detailed in my post just above this one.

I think I should be properly enrolled in a Health Care Plan by the beginning of next year (too long to explain the circumstances why I couldn't do it the past few years,) but thank you for your advice about contacting my local health services, I must do just that.

Take care,

R.J.

 

[Nikki J]

Hi
Best of luck in getting your issues seen to.

No you may not stay and ask general ALS questions. First this is not a good place for people who worry about ALS.

Second we have neither time nor energy to do this. Our reason for the forum is to support people living with ALS. This subforum is meant as a place to answer questions if a person is going through a possible diagnosis process

Thirdly I assure you researchers are and have been looking at possible disease triggers. ALS is extremely complicated nd is considered to be really a cluster of diseases resulting in the same picture clinically, each one caused by a different combination of factors.

 

[EarthlingOne]

Thank you, NikkiJ. You are right. I've noticed that a lot of people, just like me, ask questions even before undergoing a formal diagnosis process, and I do realize it takes time to respond to these folks.

Now I am leaning towards other issues causing the two things I observed, and I have diagnosed myself as probably having Ulnar Nerve fatigue or minor irritation/damage. A lot of people are mystified by symptoms like twitching and hand fatigue/cramps, and the usual course I think is for someone to search the Internet, then become very concerned due to the remote possibility that it could be ALS.

I invite people with finger twitches, and possibly cramps/weakness to investigate on the Ulnar Nerve (including Ulnar Tunnel Syndrome and Cubital Tunnel Syndrome,) as I think in a large percentage of cases this is the cause for those issues.

Thank you, and I wish you the best. Thank you to everybody who took the time to help me.

 

[EarthlingOne]

Just to follow up, and I'm not meaning to get any response from you, as I'm sure you have more important things to do than tend to the insecurities of a hypochondriac.

Maybe my idea that this was due to Ulnar Nerve was misguided, as now I have fasciculations on my right calf and right toes. I don't know what to make of this, and of course I'm concerned all over again. Since I appear not to have generalized fasciculations and they are more focal, it's concerning. Would it go from the left hand to the right foot/calf? Are the nerves serving these two areas adjacent?

Still no weakness of any kind that I can detect, as I can even do one-legged toe stand ups with my right leg, and my left hand doesn't seem any weaker than it has ever been.

I do realize that stress and anxiety can cause havoc in your nervous system, so maybe this is it. The last 5 years have been hellish due to an alcoholic wife and dealing with the consequences of her actions, temporary homelessness, etc.

EDIT: Just venting out a little. No need to respond, and thank you for even reading this.

 

[KarenNWendyn]

Ignore the twitching. It doesn’t matter if it is localized or widespread. The more important issue is that you report no weakness or failure. You report you can even do “one-legged toe stand ups” with your right leg.

If you are concerned, I would urge you to see a doctor. You are clearly anxious.

To continue asking strangers on the internet to reassure you isn’t going to yield any new information or improve your mental health issues.

 

[EarthlingOne]

Ignore the twitching. It doesn’t matter if it is localized or widespread. The more important issue is that you report no weakness or failure. You report you can even do “one-legged toe stand ups” with your right leg.

If you are concerned, I would urge you to see a doctor. You are clearly anxious.

To continue asking strangers on the internet to reassure you isn’t going to yield any new information or improve your mental health issues.

Thank you, Karen. Rationally I understand what you say and agree with it. Yet I will continue struggling with this. I hope I can get over it soon, as I can't afford my mind to be taken over by so many worries, I've had enough of that for the past few years.