Does ALS present this way?

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ChrisHill44

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Firstly – let me apologize for feeling the need to even come to this forum, as I know all of you are fighting through your own ALS challenges and journies. I have read the stickies (thank you, very helpful) however some symptoms continue to worry me.

I am a 36 yr old male and I have been to my PCP several times and she sees no cause for concern. I am usually reassured for a day or two but symptoms send me back into panic.

A few weeks ago I noticed some consistent twitching in my right thigh. that has since randomly begun twitching both legs, arms and back and sides. I also began feeling perceived weakness (not clinical) on that right leg. Since then I’ve had what I can only describe as tightness or fatigue in both arms, and shoulders. I also feel more fatigued when standing for long periods of time. I feel both legs starting to tire. I also recently started experiencing neck, shoulder and back pain that comes and goes, and can move from one side to the other.

The most concerning thing to me is when I go to sleep, I have very persistent twitching, and I’ll wake up with reduced feeling (even some tingling) in my arms from shoulder down to the fingertips. If I begin to move my hand around and flex, that feeling dissipates, however my arms and shoulders still feel fatigued, that nefeeling hasn't left in 2-3 weeks. I’ve had an MRI and CT scan which show nothing abnormal.

I’ve listed out symptoms below to make it easier
  • Perceived weakness when standing for long periods of time or walking
  • Shoulder and arm fatigue that never truly goes away, will wax and wane with severity
  • Weight loss – lost 12 pounds over the last 2-3 weeks
  • Shoulder, neck and back pain that moves around - could it be muscle spasms?
  • Tingling or loss of feeling in both arms after sleep
  • Twitching that gets worse when laying down or trying to sleep - occasionally during the day but predominately at night
  • Excessive Hunger
  • Sweating more than usual
  • Loose stool upon defecation
I haven’t had clinical weakness as of yet but wasn’t sure if the disease is progressive in that you notice yourself slowly getting weaker (needing to exert more effort when doing routine tasks) when doing certain things until one day, you are no longer able to do that certain thing. My primary is convinced its muscle/skeletal and will get better over time, citing that ALS traditionally begins at feet and progresses up – but I’m concerned that ALS can present differently and its not being given serious consideration.

Please give your candid opinions.
 
Hello there-

Please make sure to read here: Read Before Posting

You ask if ALS presents this way, and the above link pretty clearly outlines why it doesn't. You list things not at all remotely associated with ALS. What it might be is something you will have to keep working with your doctor to figure out.

Take care
 
Thank you for your response. I have read that and you're right that I need to heed that info more closely. I just know that ALS can present differently for many as it may not be linear (feet - to arms - to trunk etc.) so I was curious if anything listed out here gives anyone pause to think it would be.

Thank you for your time and effort in responding.
 
We wouldn't bother writing that detailed post we ask you to read if it wasn't our position.
You don't list anything that would suggest ALS even a tiny bit I'm very happy to say.
That's all we can say, now work with your doctor please, that is your path back to health.
 
Sorry to post once again everyone - I did want to ask for clarification on something I couldn't find in the stickies. That's the symptom of spasticity. Over the last week or two, I've had this weird sensation go through my arms, shoulders and back that is exacerbated by movement. It's almost like the muscles are engaged constantly and give a feeling like you had if you had goosebumps. The feeling will dissipate with rest (however muscle fatigue remains) I haven't been able to get a clear idea of what spasticity feels like (likely because its hard to explain) but didn't know if it presents like that.

I find that my muscles fatigue quicker than I ever remember doing even routine tasks, like putting on a t-shirt (I'm still able to do it but the arm muscles feel tired more quickly) Could that be due to something like that?

I have a follow-up with my PCP in two weeks to continue to pursue this but I did want to get clarification from this knowledgeable group. I appreciate your time and consideration.
 
What you're writing is not how ALS presents, spasticity or not. Period. Full stop.

Please, continue to work with your doc.

Good luck to you.
 
Since no one on this site is a neurologist, we always insist on following up with your doctors as the responses suggest. However, your PCP’s comment that ALS generally presents in the feet and works it’s way up is completely erroneous, so I suggest if you continue to have anxiety about a possible neurological issue that you seek out a more knowledgeable physician.
 
See the thing is - if you have something that isn't covered specifically in the sticky, it won't be because you have some extra weird presentation of ALS.
As the sticky says - fatigue is NOT ALS.

However, as we say all the time - if you have concerns, see your doctor. We can do very little from here in text, and are not doctors.
 
Sorry to post again but I had a question regarding twitching.

I know that by and large that twitching alone is no cause for concern however i read on this forum that ALS twitching can be felt with the muscle engaged, while BFS twitching will be stopped when engaged.

I’ve felt twitching of my thighs a while standing or when I flex my thigh muscle. Is that above true about twitching?
 
It's oversimplifying to think that all twitching is either BFS or ALS. A lot is just...twitching. Normal, everyday twitching. Diet, exercise, sleep, stretching, stress, hydration can all play a role in this and your other issues, so these are all worth looking at.

I'm closing this thread because seeing the PCP is really where your focus should be. Write down your questions, be clear about your timeline of issues, and recognize that sometimes no answer is the best answer, because it means you don't have a fatal disease. Don't hold your life hostage to the fear that you do.

All the best.
 
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