What should I do?

[Mallic]

Okay, so bare with me here. I know you all get your fair share of people freaking out over this disease, I just need some advice. (Disclaimer this might be a long one)

For the past year and a half I have been having fasciculations all over my entire body which caused me concern but after reading these stickies and looking into BFS I concluded that they were benign. In recent months however, i have noticed that my fasciculations have intensified and have become more focused in my left forearm and hand,for a while I just assumed they were harmless.

Maybe about a month ago I saw my mom (she is a hairstylist of 20+ years) so she works with her hands a lot and pointed out to me that my left hand looked weird.I noticed that the area between my forefinger and thumb has no muscle (thickness?) to unlike my right. When I hold things in that hand I am likely to drop them (especially my damn keys!) if I don’t put a lot focus on holding them. There are very fine fasciculations and large ones in the hand 24/7 even with (and if not more) when I am holding something like my phone.

So to get to the thing that drove me here, I am a millennial (I know, I know, role your eyes at this one) but it is getting harder and harder to use my phone with my left hand. Keep in mind I, like everyone in my generation, always uses that thing but recently my left thumb has just sucked at typing. it’s almost like it’s asleep without the feeling of pins and needles. It is just annoying stump of a digit. I am just frustrated and want feel normal.

What do I do about this? How do I even see a doctor about this given my age of 20? I know that if I was a GP I would brush me off. I am concerned and while I know the likely hood of me having ALS is crazy how do I even get taken seriously? Do I just wait and see if things get worse? I feel bad about posting here because I really did not want to after last time. I just want someone to kind of point me in the right direction, ya know?

 

[Atsugi]

Mallic, go see your family doctor and tell her all of your concerns.
You're quite correct that your age points away from ALS.
You described your left thumb as an annoying stump. Perhaps this problem will be easily fixed. Give it a try.

 

[Mallic]

Thank you so much for replying! I will be seeing my a GP on Monday thanks again.

 

[Mallic]

So I went to the doctor today and told about the problems I have. He said I have a lot of atrophy in my left shoulder. He didn't do any tests besides like a range of motion test I think? He took some blood and said that depending on the results we will know which direction to take. I don't really know what he means by this but the asymmetric shoulder thing kinda scared me. I was hoping that I was just anxious. My shoulder and thumb keep seeming to get weaker VERY gradually I don't notice the difference day to day more like week to week. I'm scared and really don't know what to do with this anxious energy.

 

[Nikki J]

Of course you wish he had said you were fine. Please know that there are a number of causes of arm/ shoulder atrophy and most are far more likely than ALS especially given your age. I know it is hard to wait for test results and there will likely be more tests before you get a definite diagnosis. Honestly it is probably best to stop reading and searching until you have more direction and information from your doctor. Let him do his job. If you hang out here it will make you ill with worry! If you have a test result you think we might help you understand come back and ask and do let us know when you get a diagnosis but don't go reading a lot of threads which will only worry you!
Good luck

 

[Mallic]

Thanks nikki for the quick response, as someone who has personal experience with this disease do you know any questions I should ask my doctor next time I see him? I'm going to take your advice and stop hanging around here.

 

[Nikki J]

Hmmm. Obviously ask the significance of your test results. Do they suggest anything, rule anything out? What besides atrophy did your clinical exam show? Does he see a change between visits? Next step? Do you need imaging ? Xray, mri? Specialist you should see ? Ortho, rheum, neuro? What are his thoughts about possibilities? Hope that helps a bit. In the meantime try to enjoy life, take care of yourself and look forward to hearing good news from you!

 

[Mallic]

Thanks again, you're awesome I'm throwing those questions into my phone and I'm going to stay off here for a while. Take care!

 

[Mallic]

Pain is good right?

So I went to my doctor about my weakness in my thumb. All he did was put me through a range of motion test and ordered some blood work. He noted asymmetry, whatever that means no body is perfect right? I go back in next week to get the results.

Yesterday my left hand's forefinger started to feel similar to the space between my thumb and finger before it became "flabby". Today, I began to have a cramping pain in my left hand with mainly the forefinger hurting which is good, right? Doesn't sensory nerves being involved point away from ALS? I have been having some pretty intense fasciculations in my left arm as well and, to be honest, I wouldn't even bother to mention them if they weren't so concentrated. I think I have been having them in my left hand's fingers too. I am nervous because this is taking too long to get sorted out. Does any of this sound familiar? Thanks for your time.

 

[Atsugi]

You're right, people are not symetric. You're right that ALS is about failing, not feeling. You're right, we're not really concerned about twitching. Your symptoms are really generic and could be anything, so I wouldn't worry about ALS. Keep your appointment and get to the bottom of it.

 

[Mallic]

Hello again,
In the past few weeks I have noticed an increase in the intensity of my symptoms. I have noticed that my twitching has really picked up and is very prominent in my left leg which in the last past 10 days or so has felt weak especially around the knee. My Hamstrings and butt practically jump off me sometimes. Whatever, it’s twitching, but it is putting me in a lot of distress. Especially because I have started having coughing fits after I eat something. I am not sure if my senses are heightened because I suspect something is up but my swallowing has slowly started to get worse with the feeling of having to burp after I eat to now me hacking up a lung. To get to the point have any PALS that you know of coughed a lot AFTER eating not during. Thanks for your time I really appreciate it.

 

[affected]

hon try as you might, still nothing like ALS in what you are describing.

However, what you describe is spot on for symptoms of increasing and prolonged anxiety, pretty classic really. I'd go to a doctor and explain what is happening and your anxiety of what it means and you can get help and this is curable.

All the best