Fearing ALS

@cadabra Hi there! I'm so sorry to hear of all your struggles and worries ... unfortunately, I can relate. My health journey is 10 yrs long, so I'll spare you the details, but one of the diseases I have is ALS-4 (juvenile als - rare type). I truly believe each individual is different and no journey is the same (i.e. 10 ppl can have the disease, but not all are "textbook" and have different symptoms etc), if you get my drift. How comfortable are you with your current neurologist? Are you willing to keep pushing him/her til you find solid answers or can better manage your symptoms? One way to know for sure (diagnosis wise) is to do genetic testing. Good news is, that there are several small companies out there who will do the testing for FREE. My neurologist sent me a kit in the mail and I had to go get labs drawn then send it off, but it was a piece of cake. Results came back and I finally had something on paper to validate my struggles. I'm not saying you have the disease - please don't hear me wrong - but, I am encouraging you to not give up. And, biggest thing you can do to help yourself is not to worry. I know that sounds hard or impossible, but it isn't. Do you have a support network around you? People you can confide in for certain things or sensitive matters? Anyone who can consistently offer encouragement (not false hope) to you? Please don't give up ... I think you're doing the right thing in pursuing the speech pathologist and MRI etc, for starters, most definitely. And the second thing - which I greatly applaud you for - is, you keep on living! Congratulations on almost being done with all your schooling, that's amazing and something to be commended for!! If you have any other questions, or if there's anything I or anyone here can do for you, please don't hesitate to reach out. We are a loving community and a close family here. We got your back! Sending good thoughts and well wishes your way < 3 🙂 Hang in there!

Hi @cadabra

Sorry to hear of your swallowing issues and fears. 8 years ago I thought I had ALS when I was suddenly aspirating all my food. Lost 25 pounds in a month when I stopped eating. Trouble controlling the food in my mouth and it can just slip down my throat before I'm ready so my airway isn't closed - violent coughing episodes ensue. Also, muscle fatigue in chewing muscles and then it can be hard to initiate swallowing. Also some foods sticking in my throat a bit which may be a separate issue. Two neurologists working in tandem were also concerned, but in the end both decided it was connected to my rare neuropathy I've had for decades even though symptoms for that rarely go up into the head and neck. My EMGs were positive for neuropathy all over and showed some muscle weakness in facial muscles. Swallowing test showed some sticking and premature spillage, but I did not aspirate during the test of 6 bites with sticky barium paste. Brain MRI clear. Upper endoscopy good.

Years later, I have the same issues, but have learned how to position my head, focus, minimize difficult foods, drink water when stuff is sticking, etc. I also have lots of muscle twitches. The one neurologist that is a neuromuscular specialist also tested me for MS and Myasthenia Gravis as a possible cause -- negative for both. Oh, I also at times have the hyper-salivating issue that seems to happen when food stays in my mouth too long because I'm just not able to get it back to my throat for swallowing. All no fun, but not ALS and it really hasn't progressed. I just can't eat lots of challenging foods or the chewing muscle fatigue and aspiration get worse. I drank a lot of meal replacement drinks for years for ease until I discovered they were spiking my blood sugar so I'm trying very plain smoothies and easy to eat foods recently.

Esophagus issues such as reflux, narrowing, allergies, etc. can also cause swallowing issues, throat clearing, hoarseness and chest pain. You might consider a consult with a gastroenterologist too. They can check your esophagus with a scope. I'm sure you're familiar as you're a nursing student.

Anxiety can certainly add to swallowing issues if you feel you're choking or have something serious, but you still need to figure out what it causing the issues in the first place. Nursing school is challenging so that may be adding to your stress. You're almost done!

I also had a great uncle who died young from a progressive muscle atrophy (can't think of the exact name) so it worried me, but that's not what I have. I actually didn't know about him until after I thought I had ALS and went on ancestry.com and found his death certificate. I didn't even know him, but worried about genetics.

It's great that you are so close to graduating from nursing school! Keep up the good work on that! Hoping your doctors will give you good answers soon and that the cause is something treatable and not progressive.

@cadabra @rivermaya34 and @californiazebra have provided you with such good support through their own medical histories and advice. I’d like to add a little to what they have both written.

You know better than anyone, including your GP and neurologist, what is the norm for you. If I were experiencing the symptoms you describe I would be very anxious too, would experience insomnia, and I’m not carrying the load of nursing school that you are. I’d also suggest that you advocate for yourself and get 2nd, 3rd and however many opinions you can get to figure out a diagnosis and treatment. Your thoughts about seeing a speech-language pathologist (SLP) for another swallowing study is good especially since there is a physician (usually a neurologist) involved to confer with the SLP. If there are modifications you can make with liquids and food then the SLP can make those recommendations.

I imagine you are under tremendous pressure at school and with current and upcoming exams. Do you have a mental health therapist that you talk with? If not, are there therapists available in your community or your school that support you emotionally? When I was doing a postdoctoral fellowship I developed anxiety (panic attacks) that I’d never had before. Anxiety and depression were lifelong and ebbed and flowed but the panic attacks were frightening and interfered with my life, my relationships and my work. I saw a few different therapists before I found someone I connected with and I remember sighing with relief at their focus and empathy for me. If you haven’t already done this please give yourself the gift of allowing a therapist to share your emotional space as you go through this very challenging time.

How are you feeling today? Was there anything we wrote that is helpful to you?