Strange Symptoms and no answers

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RS1984

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Hello,

First of all, I just want to thank everybody for taking the time to post on here and answer questions. I really admire the courage being shown and appreciate the willingness to help others. I have viewed the Read Before Posting thread multiple times, but there are some things I'm quite curious about, and I've been frustrated by my lack of answers from doctors to this point.

I am a 36 year old male, and have been having some strange symptoms since February of this year. The prevailing symptom I've had has just been persistent fatigue. Constantly tired all day everyday. One of my other earliest symptoms was trouble swallowing. I'm not choking on food or anything, but it just seems more difficult to swallow than it used to be. Previously it was effortless, and now it takes some effort. I also have noticed that my voice feels weaker than it used to. I have to strain a little bit to speak, and I find myself clearing my throat constantly. I had some tests done from an ENT to rule out cancer (upper scope), and they also determined that I was suffering from flash laryngeal penetration, which the doctor said was not overly abnormal. It seems to be getting worse and worse when I eat, especially with meats. The swallowing and weak voice has been a big concern for me.

Early on, I was also having some strange discomfort, essentially all on the right side of my body (jaw, neck, chest, arm, leg). I wouldn't call it pain, but it just felt strange. I also have noticed some shortness of breath. Nothing major, but just sees like I can't breathe as deeply as I used to, and when I attempt to work out, I'm pretty much panting and out of breath immediately. I had a chest CT to rule out lung issues, as well as an EKG to confirm heart is in good shape.

My right arm in particular seems to be weaker than it used to be. When I hold an object in my hand for a while, my grip feels like it gets weak much more quickly than my left arm, and I've noticed a bit of a tremor in that hand too. I'm not "failing" to do things, as it specifies in the Read Before Posting, but I do feel like my right arm has less muscle mass on the triceps and forearm area than my left (and I'm right handed too, so it should be my stronger arm). I wouldn't call it pain that I feel, but when I eat with a fork, write with a pen, or even brush my teeth, I feel basically a soreness in that arm/hand, kind of the way you would feel after your body is tired from a long workout and your muscles are sore from it. But only in that right arm/hand.

Over the past few months, I've noticed a bit of a change in the my ability to speak. My wife doesn't notice it, and nobody else has mentioned it to me (as mentioned in the Read Before Posting), but I feel like it's tougher for me to pronounce certain words (particularly words like opportunity, continue, etc). It's very noticeable to me, and previously when I would read, it was quick and easy and I never stumbled over any words. Lately, I've found myself rereading and repeating and taking much longer to spit stuff like that out. I feel like it has been getting worse and worse, and I find myself slurring words that I'm used to pronouncing with ease. When I open my mouth very wide or when I move my tongue around a lot, I feel a strange feeling in the back of my head, almost just like pressure back there. Same goes for when I talk for a long period of time. I feel like weird pressure or aching just on the back of my head right above my neck.

I also began noticing some twitching beginning in my left eye around April. It was something that occurred a few times a day, every day for a few weeks, then stopped and moved to my right eye. That stopped for a couple months, but then early September, I began to notice that twitching on the right side of my head (near my temple and above my ear). I've noticed some on my jaw too. My eye twitching returned a few weeks ago in both eyes. Every time I close my eyes and reopen them, my eyelids and the bottom part below my eyelid will twitch rapidly for a few seconds, then stop. I've noticed twitching also in my triceps area on my left arm, my left leg just above the knee, and my right calf. They don't occur in the arms and legs everyday, but when they do, I cannot get them to stop. On Sunday, the twitching in my left arm was going up and down the arm for about 5 minutes. It would twice up near the top of my bicep, and then down to the elbow, then in between, and back up. It was terrifying, because that was really the first time I've seen the twitches bounce up and down to multiple places like that, and nothing I did would stop it. When it stopped, as soon as I flexed the muscle, it would start again. Today, it was my left calf that was twitching in bed this morning as I woke up, and nothing could make it stop. It was twitching very fast, and finally once I stood up, it eventually did stop.

My muscles on the right side of my body, namely forearm (probably the worst), tricep, and leg/calf seem to be a bit sore more often and very quickly. If I go for a walk, my right side muscles will be more sore than my left, and I'll feel that crampy muscle soreness on that right calf only. I don't quite know the difference between a cramp and spasticity and soreness, so I may be using those words words wrong. Even when I'm sitting in a chair with arms on it, the back of my right arm feels very strange, almost like it's twitching/shaking.

Another thing that came back in my bloodwork was low free testosterone, which my doctor said may cause some of my ongoing fatigue. However, I've read that low T is common with motor diseases, so I didn't know if that potentially was the root of everything.

Also for about a month, I've had a feeling in different parts of my body that was almost like a spider or bug was crawling on me. I would feel it on my leg, and then I'd check and it would go away. Or on my arm. Just felt like something was barely brushing up against the hair on my leg/arm. It doesn't last too long, but it would go to different areas on my body. I've never experienced any of these symptoms until recently, and it seems they've gotten much more pronounced in recent months and weeks.

There have just been so many symptoms that have concerned me, and I know according to the Read Before Posting that some of these things are not at the point of "failure" yet. But wouldn't this weakness maybe be the first step before I actually fail to perform a task? I know different diseases can progress at different paces, so I worry that I may just have the very beginning stages and be in a situation where things will progressively get even worse.

Sorry to type so much and keep going on, but it's just a lot of info to get out there. Thank you all so much for everything you do. I truly appreciate any time you spend reading/responding to this post.
 

lgelb

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I don't see any reason to worry about ALS, but you do, so why not see a neurologist and be reassured? I would also ask that person about screening for RLS/PLMD and sleep apnea.

Other things I would be looking at: allergies, sinus, and GERD.

Best,
Laurie
 

RS1984

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Hi Laurie, thank you so much for your reply! I apologize, I was typing so much that I left that out. I have seen a neurologist, and he ran an EMG and nerve test. He said that it came back "mostly normal," but he detected a little weakness (I believe that was the word he used) around my right elbow. I've seen many people say that if you have a normal EMG, you're likely good, but it worried me that this was not fully normal.

He didn't seen to think it was anything majorly serious and just wants to keep an eye on it. I was a little concerned, because the doctor I saw was not very highly rated (he was the only one around here who I could get an appointment without waiting 2-3 months). I do have an appointment scheduled with another neurologist to get a second opinion, but as the symptoms keep getting worse, the waiting for the appointment is driving me a bit crazy and has me thinking nothing but the worst. Very stressful. Thank you again for the info. I will look into everything you mentioned and will also mention it to the doctor when it comes time for that appointment. I truly appreciate your insight!
 

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If you can post the report with your name redacted, we can be more helpful, but certain elbow/forearm nerve problems are very common among those who keyboard, text, game, lift, or operate machinery, just to name a few. They do not signify ALS. In other words, an EMG doesn't have to be perfect to be not worrying.

Twitches tend to feed on each other, and if no one else notices what you think are speech problems, they're likely not really problems.
 

RS1984

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Thank you again. I truly appreciate your kindness in taking the time to talk with me. I do not have a copy of the EMG, but I'm reaching out to my doctor's office to try to get one. The receptionist has been out for a while, and I need to work with the temp to get it.

The speaking problems, I really notice when I'm reading, as read the Bible out loud every night before bed. It used to take me about 10 minutes to get through a chapter, but over the past few months, I'm stumbling over words and mispronouncing words to the point I end up re-reading each verse multiple times. It now takes me about 30 minutes to read each chapter. To your point, no one else has noticed it, so that is good at least, but it feels very apparent to me, and it's something that even when I try hard to focus on how I'm pronouncing, I'm spitting words out different or in a more slurred/jumbled way than I used to 4-5 months ago.

Thank you again for all your help!
 

lgelb

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Again, I would look at sleep and movement disorders, and common GI/respiratory issues. Speaking differently to your own ears might also relate to dry mouth or needing a night guard during sleep due to tooth grinding.

None of this relates to ALS. If your internist is not up for helping you, maybe find one who is. But that has to happen on the ground where you are, not here.
 

RS1984

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Thank you again for all of your help and knowledge. I spoke to my doctor's office and requested my EMG write up, and she told me that the doctor had not "given any remarks or opinion" on the tests yet, because he's slow in doing that. She said she could not give me a report until he gives an opinion and then she can type it up. This sounds pretty insane considering the EMG was done 2 months ago. I'm wondering if I just chose a doctor who is not so good. I can't believe they don't have this info to provide me.

Meanwhile, the twitching in both legs (calf area) has gotten worse. My leg will twitch and go up and down the leg in multiple spots. If I flex the muscle, it will stop for a split second, and then continue as soon as I let go. It used to only be once or twice a week, but now it's been every day in both legs, a few times throughout the day for longer intervals each time. The way this has progressed is scary. I've also been having the twitching under my right eyelid now every time I close my eye and reopen it.

I need to make an appointment with another neurologist to be safe, because I don't like the fact that this doctor doesn't have my test results. He keeps saying that he doesn't think it's something serious, but the fact that the twitching keep increasing and not having an EMG to look at is just making me very nervous! Thanks again for everything, and hopefully you had a nice Thanksgiving.
 

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Slowness in reporting is annoying, but the headlines he gave are reassuring. Twitches tend to multiply when you worry about them.

There seems no reason for a second neurologist to me, but you have a number of other possibilities to explore with your internist. The fact that you said fatigue was your major concern points to something systemic, if anything, and primary care is where you go for that. Even a telehealth appointment can really help allay your fears.
 

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I'm really feeling that if he hasn't written up notes on your EMG there was really nothing to write up.
Twitching means nothing.
Go back to your PCP and ask for help dealing with what is going on - don't chase ALS any further.
 

RS1984

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Thank you both. I appreciate you insight more than you'll ever know! I've just felt so weird for months now, and I've had so many tests to rule out other possible causes that it really had me afraid that this could be it, since my symptoms all seem to fit and I've heard many people say it took them more than a year for doctors to figure out the diagnosis. It's great that they've found nothing wrong, but that keeps leading me more towards something like this, because I know this is something that usually takes pretty long to get diagnosed.

You're right. I need to make an appointment with my family doctor, who I haven't seen in 4 months and explore some of these other potential causes. Thank you again, and God Bless you! Hope you both have a great Christmas season!
 

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The real thing though is that your symptoms don't all seem to fit at all. They are also not showing a progressive nature, even though you are reporting more symptoms that is not what we expect when we talk about ALS progression.
I appreciate that you think they do, but they simply don't.
Your family doctor is the place to work from, go back with an open mind and let your doctor work this through.
Continuing here is unlikely to be healthy for you, so please talk openly with your doctor about what is happening and what the best steps are that you can take to get back to full health. I do wish you the best.
 

RS1984

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Thank you again for your encouragement and insight! It is greatly appreciated. You're right that I need to make an appointment with my family doctor, as I have not really made any progress with my neurologist. I know there are some of my symptoms that don't necessarily fit, but I feel like the weakness and fasciculations have both been progressive in nature. It's not at the point yet where I have failed to do anything (as mentioned in the Read Before Posting), but the main area I notice it is when I'm gripping a fork (my had begins to feel a dull, cramp-type pain after a few seconds and makes it more difficult), and especially when I'm picking up/carrying my daughter. She has only gained about 2 pounds since the time my symptoms began around 10 months ago, and I used to be able to carry her effortlessly, but now it feels like it's very difficult and seems my arms are much weaker and I cannot hold her for very long.

That coupled with the fact that my twitching has spread (from one eye to the other, then to side of head, then to left arm, left leg and right leg) and now I've even noticed a throbbing type of twitch in my stomach which is very odd. As well as the twitching returning to my eyes and now having been constant every time I close and reopen them for 3 months now. I know that the twitching alone means very little, so I try not to stress to much about that. But when I think of that within the same context of my arms and legs feeling weaker and getting tired so much quicker than they used to, it's scary.

I keep seeing horror stories of people who went to the doctor with symptoms and either were misdiagnosed or told they were fine, only to have them gradually worsen and then a couple years later, they finally get that diagnosis, so that's one of the things that has me worried and wanting to seek additional options (whether it be from a different neurologist or my family doctor). Thank you again for taking the time to talk with me and share you knowledge. Your patience and willingness to help others is such a Blessing to many people, and I just hope you know how grateful I am for your time and patience. God Bless you, and hope you have a Merry Christmas!
 

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Progressive means - oh today I can't unbutton my shirt, next week I can't open a jar, next week I can't unlock my car, next week I can't even pick up keys as my hand won't grip anything. Next I can't even lift my arm, and now I keep falling over.
You say you have progression but have not yet failed to do anything.
That is not ALS - this disease STARTS with failing to be able to do things and progresses to failing on more and more tasks.
It does not start by feeling, weak and getting tired doing stuff.

Please SEE A DOCTOR, sorry to yell but you tell me you should do that, well please, please do.

Only someone examining you can explain why your symptoms match this or that.
You are not subjective enough and cannot strength test yourself.

Let us know the final diagnosis, but this is truly not the place for you, and being here is so bad for your health.
 

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The very fact that your twitching and throbbing are moving around, coupled with your clean EMG and exam, argues even more strongly against ALS, as does your lack of clinical weakness.

I listed several non-ALS issues to explore, but each of these is best addressed up front with your PCP, not by shopping neurologists.

The "horror stories" you cite are seldom literally true, and definitely don't apply to you. Once again, there isn't some feeling of weakness that comes before losing abilities. They are simply lost. Your reading has led you astray, and you are living out your fears. I hope you can walk back to real life, rule out some actual possibilities, and get help for your anxiety, whether directly in counseling, or by learning more about where your health really stands.

I think we are going in circles, so we'll end here for now. Feel free to provide an update when you obtain more insight from a doctor, which can help others in the same situation.
 
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