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jbmidwest

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Oct 30, 2016
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Learn about ALS
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US
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MO
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Columbia
Hello everyone,

First, I do want to say I have read the sticky but do have some questions and want to do my best to respect your time as I know some may be limited on reply's.

I'm 29 years old and been having weird symptoms for about two months now. It started with chest pains, I did workout lifting heaving weights and I attributed to that. Then, after a month of taking off I started to notice my right shoulder having pains like I've never felt before. Within a few weeks of that occurring, I've developed forearm pains where my muscles will feel very tight and exhausted after doing simple things like putting my three year old daughter in and out of her car seat. Along with those few weeks, I've now developed twitching where it started in my right tricep but now mainly in both of my calves and legs. My calves also have a "crampy"/exhaustion feeling as well. I've had twitches before, but not to this extent.

As far as weakness goes, I don't feel I'm too weak as I can go into the gym and still bench press + squat heavy weight, just not as much as before taking that month off for chest pains. I've been to my GP whom has done the clinical strength tests and he confirms that I'm not showing weakness. To ease my mind, he did refer me to a neurologist to discuss my symptoms and do some testing.

I know twitching and these symptoms can mean 100 different things and as stated in the sticky, ALS is not about "feeling" and twitches mean nothing. It concerns me because I have done what everyone else who thinks they have ALS and dug into a few rare cases, here and the internet, where some of these symptoms did appear before weakness and diagnosis. Something just feels off and I can put my finger on it.

It's worth knowing I'm currently battling anxiety right now (since the chest pains) and if the Neuro appointment goes well I'm going to ask to be referred to a Psychiatrist to help deal with my anxiety.

Again, I want to respect boundaries here. I know there are many who are limited in replies and it takes a great deal of energy to do so. Apologies in advance. It's just very concerning because in this state I think about my family, friends, and think there is seriously wrong.

So, do any of the above symptoms sound like a very early stage of ALS?
 
The sticky is our official position, we wrote it and we stand by it.

I have no idea why you posted all that knowing the sticky answered it.

You DO NOT HAVE ALS.

You do need help and should follow up on your anxiety immediately. Remember to tell the psychiatrist that you went as far as asking terminally ill people to reassure you even when you knew what it would take for them to do that.
 
Sorry, I did not mean to offend and I'll leave it at that.

Thanks for taking the time to reply.
 
Had my Neuro appointment today and wanted to post an update not for asking opinions, but for those who are searching this forum. The Neuro did a clinical exam, everything was normal except for "deep tendon reflexes in the lower extremities are slightly more pronounced." No clinical weakness and gait is normal.

He did schedule me for an EMG to move closer to a diagnosis which happens on Dec 22 and I'll post the updated results.

Again, I'm not posting this update asking for a diagnosis. I'm updating the post for those who've landed on this forum by Google and experiencing similar symptoms. I want to be very respectful to the members here and their time.

Thanks
 
Had my EMG today, tech did the EMG and the Neuro did the nerve conduction study. At the end of the NCS the Neuro said he does not see any nerve damage and only fasciculations in a few muscles. Also said my nerves are irritated causing the fasciculations could be due to stress, anxiety, or caffeine, he wants me to work with my general neuro to find the cause. As a reassurance the Neuro mentioned he does see a lot of people my age and older with the same concerns and usually ends up with the same diagnosis as BFS (begin fasciculation syndrome) or CFS (cramp fasciculation syndrome). He also mentioned Dr. Google is a bad man, but can understand why people are googling their symptoms.

I do greatly want to apologize for ending up here. I know they're are huge struggles with this disease and anytime spent on this forum is precious. I hope this post can help other people who ended up here from Google without consuming member's time.

As a side note, through small talk I asked the Neuro if they are close to finding a cure for ALS. He said no, but there is a promising treatment that currently is approved in Japan and South Korea to help stop the progression of ALS. Mitsubishi Labs has asked for approval of the drug in the US, but the FDA is dragging their feet on the approval process.

Thanks for your time and Happy Holidays!
 
Thank you for the update. Congratulations!

The medication is Edaravone in case anyone wonders. The Fda is supposed to give a decision by June 16. We all hope they approve without asking for more trials to be done.

Happt Holidays!
 
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