Doctor states a potential for ALS

[Robious]

Hi,

I find myself here because honestly, I am unsure if the doctor I saw was really offering me any good information. Not to criticize the doctor I saw, just that he was not my PCP who is on vacation.

I just visited my doctors practice and saw the on-call physician. Not my normal PCP. I gave him my rundown of symptoms, described my history, and let him know that I suspect anxiety. His first response was he was doubtful of anxiety, and was leaning more towards something "electric". His first thought was possibly ALS, but as he puts it that while he has it as a potential it is down the list. In the mix, but a low percentage. I can't speak for everyone, but any percentage was concerning to me. To the point I walked out to my car and started crying. So, I am posting this to get some feedback from folks who actually have gone through this. Because, as I stated above, while this doctor might be totally great, he is not my regular PCP, and honestly I vacillate from I have it to no way I have it.

So, here is my background and history. 49 year old, male, non-smoker, fairly fit. I DO suffer from anxiety, and I think that all of this is rooted in that. Never taken drugs for the anxiety, but have seen a therapist from time to time to deal with it. But, anyway, here is the history - starting roughly in February (2016) I noticed a muscle twitch in my left arm. It continued non-stop for a month before I went to see my doctor. I did not actually get to see him while there, I ended up with the physician on-call for the day. She stated, nothing to worry about, go drink some vitamin water and relax. At that point I was certainly relieved. But, the muscle twitch continued, as did an increase in twitching all over my limbs - spreading first to my right arm, and then to both of my legs. In addition, I had this general feeling of weakness as well as a buzzing feeling in my muscles.

Jump ahead to April. I see my PCP this time, and he does a strength test. He states all good, probably anxiety. Once again, I am relieved, but in the back of mind I am feeling slightly unsure. The buzzing feeling in my arms and legs is a symptom of anxiety I had never had before. I have had chest pains, general lethargy, depression, etc., but never the types of symptoms I was/am experiencing.

Fast forward to yesterday. The general twitches (those that are utterly visible) have subsided, but the feeling of tremors or muscle shaking in my arms and legs has not. I have lost muscle mass in my arms and legs. Not a ton, but something that I have noticed. At this point I should mention I had a hand injury in my dominate (right) hand that has limited all forms of lifting - not that I can't lift, just that it hurts to do so. As such, after 4 months with the hand injury I may be dealing with muscle loss associated with lack of actual exercise.

The doctor I met with yesterday said this - I would say the likelihood of ALS is maybe 5%. He took blood to rule out mineral or thyroid issues. Beyond that he says that it may be nothing. If the blood comes back clean, no issues, then his gut is it's nothing or possibly ALS. That if in 3 months I continue to notice muscle loss we should start looking hard at ALS.

Not very comforting, but it is what it is.

Long way to get to my question for anyone who gets to read this. What are your thoughts? I have noticeable muscle loss in my arms and legs, not utterly significant, but when I look at photos of myself from 6 to 12 months ago I can notice a difference. For the most part the twitching is all but gone, with the exception of the vibrating feeling in my muscles of my shoulders, arms, and legs (to be honest sometimes I think it's heart palpitations that are being felt in those places, and then sometimes not). The issue with the vibrating is that it is consistent, and rarely do I ever not notice it. I feel slightly weaker, but I can go to the gym and run 2 miles on the elliptical and curl 25 or 30 pounds with relative ease in my arms. I'm not exhibiting balance issues, but I have had cramps in my legs that can't be explained. No speech or swallowing issues.

That's about it. I am now waiting on the blood work, and I guess I am now waiting to see if I continue to worsen. Has anyone started out this way? From all that I have read on this forum it errs more on the side of anxiety, but I am hung up on that "5%" that the doctor told me. Any thoughts, advice, etc. would be greatly appreciated.

Thanks.

 

[lgelb]

Philly,
Get yourself to a different practice. You don't want to have your health anywhere near that schmoe, however great his partner is. Pretty much everything you report he said/did is nonsensical. If he reports anything abnormal back from the blood work, take it somewhere else.

My advice:

If you continue losing muscle and begin to experience clinical weakness (inability to do bite-sized tasks you were able to do before), get a 2nd opinion at the neuromuscular clinic at Jeff or Drexel. I doubt that will happen, but it's your hole card.

If you have "palpitations" that interfere with daily activities or exercise, whether they are connected w/ the buzzing or not (which is possible) get a script from an internist or cardiologist for a beta blocker or CCB that can alleviate these, assuming you are screened first w/ EKG/echo for any cardiac issues.

See a hand therapist for an eval of your injury, to see if it's healing as it should or needs [further?] therapy.

Eat, drink, de-stress, socialize and nature-walk yourself healthy. Hot tub, massage, serve some food to the homeless...I'm sure Philly, like other cities, has Meetups where you volunteer w/ like-minded people.

Rx for the anxiety is always a last resort, but since you've gone this long without, and sound pretty together overall, I suspect some of the above will help more.

Best,
Laurie

 

[Atsugi]

Robius, I'm not a doctor, so I won't attempt to say what is wrong. But I do know ALS fairly well, and I can tell you with total confidence you needn't worry about ALS at all.

I read your post twice, slowly, trying to find why you came to an ALS website. I hate to say you saw an incompetent doctor, or maybe misunderstood the doctor, or maybe... I just don't know what happened at the doctor's office. I just know that you didn't describe anything to us that would have anything to do with ALS.

Do what Laurie said, above. She's really smart.

 

[Lkaibel]

Robius, I am sorry the Doctor you saw was a doorknob. The propensity of some of these folks to casually mention terminal illnesses with little to no (in your case I vote for "no" ) basis to support that shocks me sometimes. Lauri and Mike have given great advice.

 

[KimT]

I can only add one thing. I would bet ALL the money I have that you do NOT have ALS or anything like it.

Please never go back to that doctor.....NEVER.

 

[Robious]

Thank you everyone. I am so grateful for your responses. Reading your posts made me take a step back and do a lot of thinking about the situation.

My family practice is with the University of Pennsylvania. Terrific doctors, but I had never met with this last doctor before. His relaxed attitude at presenting ALS as a possibility sort of freaked me out. As with everyone who goes through the situation of constant muscle twitching the first thing the internet tells you is you have ALS, or MS, or nothing good. But if you spend enough time researching you also realize that it is most likely anxiety. So, I walked into the doctors office with the attitude "Hey, I just am looking to you Mr. Doctor to tell me that there is nothing physically wrong with me, and that my anxiety has found a new way of reminding me that it is still around." The thing was he literally within the first few minutes said, no to anxiety and yes to the possibility of ALS.

Listening to what you each wrote here I am in agreement that it is most likely not ALS. Heck, when I went to the doctors I was pretty convinced it was nothing. So, I will wait to see what the blood work states. As I said, most of the muscle twitches have gone away. They were around for 6 months, but finally seem to have gone away. Which from everything I read points to something else completely than ALS. While I feel weaker and clearly am losing some muscle mass I am going to contribute that to the possibility that when I tore a tendon in my hand (been going to a hand doctor for 4 months with the hand injury) I simply stopped doing any type of lifting of nearly everything - including my 5 year old.

If something should change, or I do in fact start to exhibit those types of strength loss or such I will be sure to be back. I wish you all the best.

Thank you again.
Rob