36 male seeking insight

[Oneputt23]

Thank you to everyone who contributes to this website. My heart goes out to those affected by this terrible disease.

My name is Andrew and I have created this thread with the hopes of gaining some insight into my current health situation. I am a 36 year old married man with one beautiful little boy and reside in New York. I am a healthy individual who sleeps well, exercises, doesn't drink, and eats well. I have never suffered from anxiety nor depression and take no medications.

6 months ago I noticed my right calf was lightly twitching 24/7 and that my calf felt tight out of no where. This quickly increased in severity and seemed to quickly spread to my other calf, then to my right foot, then to my left foot, and soon I was having twitching all over. The twitching is in my calves 24/7 and is visible. I twitch everywhere else in the body but these are sporadic and vary greatly in frequency and intensity. My shins and calves often feel like I ran a marathon the day prior even though I did not. My right ankle seems to constantly feel weak/as though it is compromised as well; as if it is 90% healed from an injury.

Oddly I have had 2 upper respiratory infections in the last few months which is extremely rare for me. I have had the 2nd respiratory infection for approx 2 months and two rounds of antibiotics haven't done anything for me. Every morning I am coughing up/blowing out of my nose a tremendous amount of discolored mucus. My sinuses feel constantly clogged. My ENT is perplexed and is sending me for a CAT scan to see if there are any structural issues. I am concerned about these respiratory symptoms due to my twitching and due to the fact that the doctor is perplexed at how I am not responding to antibiotics. I have read some stories about those with ALS noticing some post nasal drip/upper respiratory symptoms early in their journey.

I have seen an ALS specialist on Long Island. At 1 month she gave me a clean physical exam and an EMG that only showed 3 fasciculations in my left FDI and my left calf. At 5 months I received another clean physical. At 6 months my EMG showed fasciculations in my right FDI, both calves, and right forearm (a total of approx 15 fasciculations) this time. She has asked me to follow up in March and stated that I do not have ALS at this time and that the game plan is to monitor me. She ordered a ton of blood work and everything came back normal. I have had a full rheumatology workup as well.

I am seeking insight with regards to the following questions:
1) Is my pattern of fasciculations concerning in any manner?
2) Should I be concerned about the increase in fasciculations from 1 EMG to the next?
3)Has anyone experienced or known of someone who suffered from mucus issues/constant sinus issues on the outset of having ALS?
4)Should I seek a second opinion for any reason?
5)I would describe my shin discomfort as "shin splint like" yet I haven't engaged in any activity that would give me shin splints. I read about several middle aged persons who have "shin splint like" feelings as an initial symptom. Has anyone personally experienced this?

I have gone from a very capable and active person to one who feels like their body is suddenly betraying them. I used to play basketball multiple times a week and feel as though my legs wouldn't be strong enough to play for even 15 minutes. Thank you for taking the time to read and consider my post. I am aware that responding to posts takes a great deal of time and effort for many of you and thank you for your extraordinary effort in assisting me.

-Andrew

 

[lgelb]

Hi Andrew. I would say:
1) Not to me.
2) I wouldn't be.
3) Can't think of anyone.
4) It sounds like you are being managed appropriately. The ENT may run some more labs or refer you to ID if the CT is negative and your infection continues resistant
5) Again, I can't think of anyone, but someone else may pipe up.

Even if you never tested + for COVID, you may have had it, and the postviral phase can entail everything that you describe, including susceptibility to infection, and more. As the only respiratory virus that actually infects blood vessels, there is no such thing as "mild" COVID. So you might end up separating benign fasciculations from a postviral syndrome-- your problems aren't necessarily all linked.

And sometimes a sinus infection is just that. As you know, we are seeing more resistant organisms with warmer temps and overuse of abx.

There are physical rehab programs for long COVID and if everything else shows up negative, that might be an evaluation to consider. I would certainly only exercise to your capabilities of the moment, rest as you need it, and not feel that you need to train up.

The anecdotes you cite are not familiar to me, but I always caution that "my early symptoms" accounts and videos are skewed by a lack of objectivity, uncertain recall, and sometimes commercial agendas. Thus, I would look to the medical literature and places like here, with actual critical masses of P/CALS, before letting yourself get concerned by these kinds of reports. Obviously, I can't rule out ALS from afar, but I can say that your kind of story doesn't usually lead to an ALS dx.

Best,
Laurie

 

[Oneputt23]

Laurie,

I greatly appreciate your thought out, detailed, and quick response. I believe you make some valid points and will consider everything you stated. For the record, I did have a confirmed Covid infection in the winter 2022.

One of the “shin splints stories” I was referencing is accessible via the below link. I understand that the mentioning of his “initial symptoms” is not detailed and there could have been other signs.

Marine fights ALS after strange symptoms appears last spring

"Just dealing with it one day at a time. (I'm) trying to maintain as much of what I have left, as far as mobility. Trying to hang on. I still have a little mobility in my hand. I'm still able to speak and eat. That's where I'm at and where I'd like to stay," he said.

www.fox2detroit.com

Best to you as well

 

[Nikki J]

It is indeed vague. Often the so called symptoms have no relation to what the pals hopefully thinks. My sister thought she had carpal tunnel. I knew from the first it didn’t sound like it. ( confirmed by the cts specialist she insisted on seeing). One should also note he had rapid progression and was dead in less than two years so I am sure 6 months in as you are he had many more symptoms where you are functioning well

Mr google is not your friend.

 

[Oneputt23]

Nikki,

Thank you for the response. I will post again in this thread if I have any notable updates with regards to my symptoms or doctor’s appointments.