Could this be anything other than ALS?

[danielc]

First thank you everyone for sharing your time and advice. I can imagine how taxing it mut be when you're coaching people that likely do not have ALS when you or someone you love had no such reprieve. I've read the pre - posting thread multiple times through this journey looking for hope or reassurance that it was something else.

My symptoms started in July/August 2023, and at this point I am probably 85% convinced this is ALS. I'm terrified naturally, and crushed at the prospect of having to tell my wife i'm sick, she is my soulmate, I cant imagine leaving her behind alone dealing with my loss.

• in july, after a year long ordeal of caretaking for my precious mother who had terminal brain cancer, i noticed shaky weakness feeling emerging intermittently. I suspected possibly PTSD related
• in august i noticed my thigh muscles (both legs) rippled like worms whenever i would crouch. this has continued since then progressively worse, with dents forming in the sides of my thighs. Note: the rippling/fasciculations only happen when crouching or actiavting the movement of those muscles. It doesnt happen at rest. I do get short muscle contractions/twitches in my legs/body each day but nothing persistent.
• Today, 9 months after onset in my thighs, the rippling and indentation has become apparent in my left calf muscle. That really scared me.
• In december i started experiencing muscle issues in my throat. Mild dysphagia, but the swallowing muscles feel almost paralyzed or weird near the back of my throat. Im not sure if it subsided a little or if I just got used to it. The last 2 weeks feel like it expanded a bit further down the back of my throat
• I have been experiencing what I could best describe as attacks on certain regions. It started in my back and core muscles, became very tight and sore and exhausted. Later it moved to my shoulders, and after that my legs experienced the same progression.
• I have been experiencing a postural tremor through the entire ordeal (ptsd?)
• I do not have access to a Neurologist due to wait times, was assigned an internal medicine specialst who did a minimal neurological exam and diagnosed me with 'essential tremor'
• Imortant?: I have been experiencing pins and needles in my hands and feet and tingling in my skin on my arms and legs. This has been off and on for 8 years, but it's much more prominent the past year...
• my physiotherapist measured my strength, things looked fairly normal but there was measurable weakness in both of my big toes, and my outer two fingers

summary:

• my legs have been in decline since august, with postural related fasciculations in my thighs and now in my left calf. Noticable dents/atrophy have been happening in both legs and my left calf. I can still walk but legs get exhausted quickly.
• My throat mechanics feel noticeably difference since December onset, dysphagia is present but very mild
• No Neurologist available, i have an EMG booked for October 2024 (earliest available)
• My CBC blood tests have always been normal
• Exhibiting no hyperreflexia

Questions:

1. Does bilateral atrophy of specific muscles happen with any other conditions?
2. I know ALS isnt typically bilateral, but does it happen?
3. Does bulbar ever start with noticeable swallowing changes instead of slurring and tongue fascics?
4. Based on your knowledge would you categorize my situation as probable ALS:
   1. Highly likely
   2. somewhat likely
   3. maybe
   4. somewhat unlikely
   5. highly unlikely

Sorry to bother you all, it's just that this is on my mind 24/7 lately, it's exhausting and best described as torture waiting for medical tests/acccess.

 

[ShiftKicker]

Hello there-

Please make sure to read here: Read Before Posting. I know you state you have, but it's clear you are focusing on the twitching and discarding the non-ALS symptoms you are experiencing.

You've asked some specific questions to ALS, but you report symptoms that are not associated with ALS. Namely tremor, sensory issues, symptoms that move around the body and/or come and go. These all point to something else. In the above link there is a partial list of some of the issues that can cause the symptoms you report.

The wait for an emg is long, yes. And it will be hard to not have answers in the meantime. It sounds like you are seeing a physio and have access to a family doctor. They can continue to track any changes. If your internist felt there was a possibility of ALS, they would have expedited the EMG. You live in a region where access to specialized medicine can be slow, it's true. I sympathize. I am wondering if it might be a good idea to try to find a therapist or counselor who can provide some support for you in what must be a stressful time and to help you process your experience with your mum.

Please take care

 

[lgelb]

I'm very sorry about your mom.

I'm guessing that you are still somewhat deconditioned from your caregiving responsibilities, since as caregivers, we often gain or lose weight, stop exercising, etc. I'm also guessing that while you were caregiving, you weren't rushing to see docs for yourself, so some of the changes that you mention could predate your having noticed them. That sounds scary, but it's actually good as regards your ALS concerns. And many of your issues could relate to sleep, stress, nutrition, etc. which a year after an ordeal like that can still be suspect.

I have not heard ALS present as you describe, so I expect a reassuring EMG, but don't put your "recovery" on hold meanwhile. Physio can really help, but, besides (and possibly along with) ALS, whatever you spend your time worrying about can be addressed as well, along with the basics of good health.