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Terrified i have ALS

Scared87

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Hello all,

Like many other posts here I've been reading, I am also terrified.

I'm a 31 year old Male. Always been an athlete and into powerlifting and bodybuilding.

I've had tendinitis in my elbows and specifically really bad issues with my left elbow for years. There's a confirmed calcified tear and well. My left forearm/bicep/shoulder have been shrinking for about a year now.

I've had little if any strength loss over the year, but my hand doesn't squeeze the same. This sounds normal considering my injury.

However, yesterday my forearms were both weak and would cramp if flexed. My entire body was having twitches. I went for a workout and had a great one. However when I got home the cramping went everywhere. It got so bad i went to the ER. Bloodwork was normal and they said I wasn't dehydrated. This worried me the tests were normal.

Today it has progressively gotten worse. My strength isn't diminished but I feel so weak and every muscle I flex begins to cramp. My mouth is dry and swallowing is difficult.

I have a family and small children and I've been obsessing over ALS for about a month (because of the atrophy). I have a little anxiety and I'm just scared.

Is it possible for symptoms to progress so rapidly in 48 hours? I cannot find any sources online that say it does.

I'm terribly sorry for wasting anyone's time if this doesn't sound like ALS. I am just sitting here with my daughters and imagining how their little lives would change if I did.

I love how inviting and encouraging this community is and after reading through all the replies I decided to post something.
 

Scared87

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I forgot to read the sticky. After doing so I think maybe my post is silly. I truly do apologize if it is.
 

KarenNWendyn

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I’m glad you read the sticky.

Injuries, tendinitis, arthritis all can cause regional atrophy.

Twitching is common, nonspecific, and meaningless. It can often result from physical or emotional stress, dehydration, or just be a benign variant.

Feeling weak is not the same as clinical weakness. And you have not evidenced muscle function failure, which would be the hallmark of ALS.

And no, ALS doesn’t progress rapidly in a 48 hour period.

So nothing in your post suggests ALS.

You may benefit from a repeat assessment from an orthopedist, and from physical therapy. But you don’t need to be here.
 

Scared87

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I appreciate your kind response Karen.

I have an EMG scheduled in the coming weeks. I'll report the results and maybe others can find my reply before worrying and posting.
 
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Scared87

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Good evening!

I am following up this evening to report that my twitching has progressed. As has my anxiety. I've been taking mental notes and discovered the following:
-coming and going dry mouth like I have phlegm. Not actual difficulty swallowing
-every time I lay down on the couch, I do so on my left side with my hand on my head and my arm parallel with the couch- back of my left shoulder twitches
-twitching totally random. Hand, then my groin, then my calf, my buttcheeck, calf, then lips
-my eyeball itself has been twitching
-i am not actually cramping. Almost feels like dehydration. Muscles are just tight when I flex them. Kinda feels like all my muscles are rusty. And when I say all, I mean every. Single. Muscle.

I found this post from this site written from 2012, which is an amazing post about BFS:
https://www.alsforums.com/forum/showthread.php?t=19094

I then went to the BFS wikipedia and I legitimately have every symptom. Would make sense the symptoms get worse as I worry about ALS.

My wife has just about had it with me worrying. I'm driving her nuts now.

It looks like BFS is diagnosed when ALS is ruled out, so I'll continue with my scheduled EMG.

If I end up having BFS, I would like to post my EMG results in this thread, if appropriate.

Heading over to the BFS forum now...
 

KimT

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Anxiety absolutely makes every symptom worse and can cause new ones. When I was younger, I suffered from panic attacks and general anxiety. A regular headache would feel like a migraine and my tolerance for pain dropped significantly. I was hyper aware of everything in my body.

You are certainly welcome to post your EMG results.
 

Scared87

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I read a lot of replies and at some point those of us in DIHALS are asked to leave because we just keep pestering. I completely understand this. I am just absolutely terrified right now and have to wait four weeks to see a neuro and get my EMG done. Those of you posting here are so incredibly knowledgeable that I just don't know where else to post... "AboutBFS" has not allowed new members since 2015 I just found out :/

Over lunch break I decided to go workout.

Though my left arm is considerably weaker (feeling, perceived), I am able to lift roughly the same weight I have been.

After my workout I stopped and picked up my bloodwork that I got done while I was at the hospital last Tuesday. Here are my results:
CPK: 779 iu/l (21-232)
T4 FREE: 1.18 ng/dl (.59-1.61)
TSH: mlu/ml: 7.01 (.34-4.82)

I would note that after I began getting fasciculations and cramping Tuesday and fears of ALS, I went to the gym and worked out pretty much every muscle of my upper body. Also, I believe my CPK has been elevated for the past ~10 years as I have been into bodybuilding.

Is there anything in the literature where someone can literally develop twitching and cramping caused by ALS in a matter of days? Is it possible I have had issues for sometime and never noticed? I have bench pressed 405lbs in competition and have been able to squat and deadlift in the mid 500's. Is it possible other muscles have been compensating?
 
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Nikki J

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Cpkwill be elevated if you consistently work out you are right. There is a bfs facebook group that is active I believe.. others have recommended it. You are correct about bfs forum was abandoned by its founder and no one was designated to admit new members. A real shame. Do look for the FB group though and also check into anxiety groups to help you cope with the wait

We don’t mean to be unkind but we don’t have the resources to support people as they wait for tests that we think are going to confirm no ALS.
 

KarenNWendyn

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Your labs show hypothyroidism (elevated TSH). Hypothyroidism can be associated with an elevated CK and can also be associated with aching and general weakness.

If you’re already on thyroid medication, your dose needs adjusting. Please see your doctor for advice.
 

Scared87

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Quick update while I await my neurologist appointment.

More bloodwork showed TSH and thyroid hormones to be normal. All vitamins normal as well.

I now have entire body-wide "rippling" in my muscles. A slight flex and it looks like worms are under my skin. Calves, thighs, chest, abs, even my face.

Overall as the days pass and my symptoms progress, it is starting to look less and less like ALS. Unfortunately every Google search for "twitching", "fasciculations", "muscle cramping" returns ALS or MS which is a real shame. For those of us with anxiety it can be rather unfortunate.

I don't need a reply, just thought I'd continue to share on my diagnostic journey to try and explain what is happening to my body.
 
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KarenNWendyn

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The video shows fasciculations. Remember that those are common and nonspecific.

You previously mentioned a TSH which was elevated at 7.01, which is consistent with hypothyroidism. Did you have a followup test which was normal? In any event, TSH should be rechecked in the near future. CPK should also be rechecked. Elevated TSH and elevated CPK can go together.

After my workout I stopped and picked up my bloodwork that I got done while I was at the hospital last Tuesday. Here are my results:
CPK: 779 iu/l (21-232)
T4 FREE: 1.18 ng/dl (.59-1.61)
TSH: mlu/ml: 7.01 (.34-4.82)

I know you are still waiting to see the neurologist. In the meantime, your story doesn’t suggest ALS to us. The neurologist appointment and EMG should be reassuring. Let us know how it goes.
 

Scared87

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Thank you for the reply Karen.

I don't want to remove my link from my OneDrive storage because I have shared that link with family/PCP. I just realized my full name is in the Metadata of that video. Can someone please edit my post to remove the OneDrive link? Thanks!
 
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