Muscle Weakness and other symptoms - Concerned about ALS

[NYGolfer]

Hi all,

I want to say in advance that your time, input, and patience with my nervous self are very much appreciated.

To give a little background, I am a married 31 year old male. Since about January I have been experiencing bad back pain that tends to occur in multiple parts of the back (lower, upper, or mid) that is at its worst when laying down. I would also often wake up with numb and tingly feet, sometimes pain would radiate down to them as well. In early September I went to see an Orthopedic Dr. who started me on physical therapy. The physical therapist noted that my right leg is weaker than my left. Overall it didn't help much with the back pain in itself. Last week my wife and I took a trip and the pain in my back, legs, ankles, and even arms were pretty bad and I had to use ibuprofen much of the time.

After returning home this past Sunday, the pain is almost completely gone at this point for no apparent reason. Since then however, in it's place I noticed that my arms feel weaker, particularly my right arm. It's noticeable different when gripping something with my right vs left and generally seems to take more effort to do anything with the right arm or hand. I've also noticed that my right arm looks a bit thinner than my left, and my wife confirmed the same. I am feeling a constant sensation in my right arm, especially in the forearm and wrist. I wouldn't say it's painful exactly but it's a constant feeling, with the forearm and wrist both being cold to the touch.

At the same time as all of the above beginning on Sunday, I've also been experiencing muscle twitches throughout my body. Legs, elbows, face, fingers. My pectoral muscles will also get very tight and uncomfortable from doing very minor things such as closing a car door. Muscle spams have been an occasional issue for me for a while though, such as a very painful spasm in my abs when doing physical therapy, or in the pectorals when I would do pushups.

A bit of an side, but I also started having oral thrush, which I am taking treatment for. Tongue and throat were feeling a bit numb, but this is likely the cause.

My main areas of concerns with all of this are with the sudden weakness in my arms, particularly the right, the right arm being visibly smaller than the left, and that this is weakness is occurring with very little pain and coincides with muscle twitching and spasms.

I have a follow-up scheduled with my orthopedic Dr. this Friday as a follow up to see how physical therapy is going. I've also scheduled an appointment with my PCP to talk specifically about all of these symptoms I am having as well.

As far as my question, does this all seem at all pointing toward ALS as a possibility? I've definitely been extremely anxious and not myself the past few days and losing my appetite especially as I keep consulting Dr. Google with all of these symptoms so I apologize if this comes across as a bit rambling and verbose. Thank you again.

 

[lgelb]

This is the kind of thing that could be anything from nothing/a need for a new mattress to lots of things, most very treatable, and possibly pain/stiffness referred from one area to the next. There is no point in speculating but the odds are greatly in your favor that it's not ALS.

Most of us have one leg/arm that's thinner, and the kind of cold/pain feelings that you describe are not typical of ALS onset. Hearing about tight pecs and such, one theory is that the cause of the back pain may merit further investigation.

Best,
Laurie

 

[NYGolfer]

Hi Laurie, I greatly appreciate your input it means a lot. I think what really started me down this rabbit hole was the fact that the pain in the back has greatly subsided all of a sudden after intensive pain, but now there is this new feeling of weakness in the right arm and hand and still occasional tingling/weakness in the legs and feet. I suppose these could still be related to the back even though I'm no longer feeling pain there. I'll see how things go with my appointments coming up.

 

[affected]

Hopefully the doctors will help you find what is going on quickly.
Feelings of weakness are not what we see with ALS, but clinical weakness is. You need a doctor to diagnose this, please don't try to self test.
Let us know the outcome of your appointments, and read the stick post if you need more, but don't google your way into a rabbit hole of your own making.

 

[NYGolfer]

Good day all,

Figured I should give an update so far as to my doctor's appointments. Again, greatly appreciate those of you who take the time out to share your perspectives with folks like me. Warning in advance that there's a lot to say but I think it's mostly positive

On Friday, I went to my orthopedic doctor. I brought up my concerns about the arm and hand weakness along with the right arm atrophy perceived by me and my wife and muscle twitches throughout the body. He measured two different portions of my arm and said there is no significant difference in size between the two (less than 1 cm). He also tested my strength in my arms, hands, legs, and fingers and said that the right is objectively as strong as the left. Reflexes of legs normal. He is ordering an MRI of my cervical spine and lumbar spine to see if there may be any pinched nerves or things along those lines. That is scheduled for this Thursday.

I also went to my final physical therapy session today for the back. Physical therapist did similar strength testing of arms and hands and said objectively same strength.

Finally, visited primary care today. When I shared my symptoms with her and said that I had been getting myself nervous with Googling she immediately said "I guess the internet told you you definitely have ALS?" She shared with me that her father actually had ALS and so has a very personal familiarity in addition to professional in that sense. She tried to reassure by letting me know about the statistics of the disease, while of course saying that nothing is impossible. Again, tested strength and reflexes. Normal. She didn't find difference in arms thickness concerning and only saw anything when I specifically said that I noticed it. She referred me to a neurologist scheduled for January 18th (earliest I could get). Her conclusion is nothing concerning with her exam and she hoped the neurologist can provide me some further reassurance and get to the bottom of what's happening if the MRIs do not.

Since the last time I checked in I've had new pain in the arm come on, like constant burning pain in the forearm and underneath wrist and palm, occasionally in the shoulder/side of neck. I still very much feel a subjective difference in strength and stamina between right and left arms/hands and feel the occasional slight weakness in the right leg and have muscle twitching randomly anywhere. When I mentioned the newfound pain in the arm, my primary care, same as the sticky in this forum, said that this would tend to point away from ALS specifically. Still have occasional lower/mid back pain.

So the result of these initial clinical exams is definitely reassuring as a start. I can't help but still feel overall worry and discomfort about my new symptoms but will definitely try my best to keep my cool as I await the MRI results and go through the long wait for the neuro appointment. I'll still provide updates on here as I go through the upcoming appointments. In the meantime, I promise not to use up the valuable time and efforts of this community with incessant updates on my personal anxiety as I go about navigating this.

Thank you sincerely,

John

 

[Bestfriends14]

Your best bet would be to live your life and to appreciate each day you have been blessed with. Updating the forum with every single appointment you have is not necessary. Please do, however, come back in January after your neurology appointment. The fact that it is so far away should also be reassuring that ALS is not on the table. When the doc suspected my hubby of having ALS, he was in with a neuromuscular specialist at the ALS clinic in two weeks. You do not have ALS; please be grateful

Looking forward to an update in January. Take good care

 

[NYGolfer]

Thank you, I'll take these words to heart as I wait for the next appointments. You take care as well.

 

[NYGolfer]

Hi all,

Wanted to be sure I came back here to provide a big update for two reasons. First to share my sincere appreciation again for the members of this community who take their time to respond to these threads and to let you know you are in my thoughts as PALS and CALS who have been forced to face this disease that is tragically well past due for more advanced treatments and cures. Secondly, to hopefully provide some reassurance to other anxiety-ridden lurkers and posters of this section.

I was able to get a much earlier appointment with a neurologist, a neuromuscular specialist specifically. Spine MRIs were normal and could not explain what I was going through. My symptoms at this point were truly getting horrible based on my own perception and I was fearing that he would confirm this with me. He performed strength and reflex tests on my arms, legs, feet and ankles. He did so calmly and rather quickly. I had to double check with him by the end and asked him outright: "Wait, was everything really ok?..." "Your exam is completely normal" he responded matter-of-factly. There was a pause; it seemed to click with him what was going on based on my demeaner and questioning and he asked me pointedly "Why don't you tell me what you think you have and I'll let you know the likelihood?" I explained how Dr. Google brought me to ALS, and he started nodding right away as if he knew exactly where this was going and that I was far from the first to come to him with this.

Again, as a testament to the diligent work done by the folks here with all of the information they put into the "READ BEFORE POSTING" sticky, he essentially reiterated all of the key points brought up in that post. Those of you frantically going through old threads here while you are in the diagnostic process trying to see what's going on (yes I know you're doing this because I was also until recently), seriously take the words in that post to heart: sensory symptoms point away from this, clinical weakness/failure are the hallmark presenting symptoms, and feelings of weakness have many, many, many causes that aren't due to terminal illness; you should hear what a doctor has to say about your symptoms before going down rabbit holes.

Ultimately, he said that he will run some blood tests and would like to conduct an EMG of my arms and legs to get a sense of what may be causing the feelings I am experiencing. He reiterated that he really is not concerned about ALS though can't definitively rule anything out without doing the proper tests. My anxious mind of course only took this good clinical exam to heart for a short time before I started to worry again. Is he just blowing me off because of my age? Is he afraid to share his real concern with me? How can I not have clinical weakness when my arm tires out from simply holding my phone and my legs feel like they have sand bags trapped to them?

Normal blood tests. This only served to freak me out more because I know that ALS is diagnosed by essentially ruling out all other causes. So my weakness and cramping truly did begin to get worse as my anxiety built up in anticipation for this EMG. I basically was trying to prepare myself for what this thing was going to tell me.

Finally, the day of the EMG. I literally felt like I could vomit at any moment. I went into the exam room, the shocks were uncomfortable but not too bad. This didn't take too long and I was more concerned with the needle test. Neurologist comes in for needle test. He tests multiple muscles in both arms, both hands, both legs, and my back. Not difficult at all. As soon as he was done testing my back, he immediately told me words that nearly made me jump up and hug him: "Good news, no ALS. In fact, I saw nothing abnormal." And wouldn't you know it, in the days afterword, my arm weakness suddenly was getting a little better day by day. My cramps and twitching weren't as persistent. My final follow up appointment with him confirmed that there was absolutely nothing wrong with the EMG (results attached). He recommended incorporating specific stretches as part of my daily routine, taking Magnesium supplements and Vitamin D (levels were low for years but I never took it seriously), and to stop going to Google first when I feel weird in the future.

It's taken me quite a while to get to this point, but finally after multiple clinical exams from multiple providers, and an EMG conducted by a neuromuscular specialist, I can accept that these symptoms that I swear to you felt very real, truly dire, and were debilitating in many ways, are likely the result of some nutritional deficiencies and poor habits. And it is a good feeling to be able to accept this fact. If you are concerned about symptoms, please work to see a doctor. If you are not truly failing in any of your normal tasks, please recognize that you shouldn't be jumping to this diagnosis, and finally, if you are fortunate enough for board certified physicians to give you an essentially clean bill of health, please believe them and move on.

For my own part, I will speak with my PCP about looking into therapy for health anxiety. I've given a small donation to this forum to support the vital work you folks do as a support system for each other, and from now on I will be including donations to ALS organizations as part of my annual spending budget. While I am fortunate enough for this disease to not be affecting me directly, my own mind has taken me for quite a ride researching this disease and learning much more than I ever thought I would over the past several months.

 

[ShiftKicker]

Thank you so much for coming back to let folk know how things went. I am so glad everything checked out, and that you had such a great communicator of a neuro.

Please take care of yourself and have a peaceful holidays.