Could this be ALS?

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New member
May 10, 2024
Learn about ALS
San Antonio
Sorry to disturb you, but I’ve been through it the past couple years and I can’t seem to get better. Thirty five year old male with depression and anxiety - around November, I started waking up with tingling in my hands and in December of 2021, I woke up one day with shooting pain in my shoulder. Urgent Care doctor said I had a pinched nerve. A few days later, both my knees went numb and my thighs began to hurt, a burning, tight achy feeling. Then my knees began to hurt terribly and my hands, toes, and calves felt stiff and painful and I had terrible fatigue. None of this has never gone away. Then the weakness started. I had MRIs in late December - lumbar, cervical, and brain - and all came back clean. In January of 2022, I had a Nerve Conduction Study that came back inconclusive. The neurologist said it was not MND and had no clue what could be causing my symptoms. Gave me gabapentin and duloxetine and sent me on my way while setting me up with a rheumatologist who was equally miffed. Subsequent visits to both went no better and either my symptoms seemed to get better or my pain tolerance got better because I just kept on keeping on. In August of last year, the pain in my knees felt I finally had enough, switched PCPs, and got a new referral for a neurologist.

This seemed unfriendly and like I was bothering him the first time I saw him. I described my symptoms and he performed reflex and other examinations, then scheduled an EMG, in which he was much friendlier and caring. It came back clear. He diagnosed me with no MND, but nothing else. He said it was probably anxiety and suggested I should get back on my antidepressant. I went to see him again this month and he still seemed unconcerned. He assured me it was neither MS or ALS but didn’t seem like he was interested in finding out what else it could be.

To date, I’m on Hydroxycloroquine, Gabapentin, and Escitalopram.

Recently I’ve been experiencing real weakness - I feel weak when standing, but not when walking - and have noticed I trip more, drop things more, and have poorer coordination overall. My knees feel weak and I have noticed pain and weakness in my arms as well. I have no trouble getting up without using my arms. I have noticed fasiculation-like spasms all over my body that seem to come and go, mostly when resting. I don’t sleep well - usually 3-4 hours, wake up, play video games or watch TV in bed, then sleep another 3-4 hours. I am in pain, I am feeling weaker than I’ve ever felt, my anxiety is through the roof, and I cannot seem to find a doctor who can help. If this is not ALS, I apologize - I don’t want to take up space. I just wanted to reach out to a community that might be able to help me, even if it is just to assuage my anxiety. Thanks so much for all you do. You guys are amazing.

Please make sure to read here about why sensory issues point away from ALS and towards something else: Read Before Posting
That should hopefully reassure you.

Please take care
Completely agree that you're not describing ALS, but the combination of meds you are on is not necessarily the greatest combination for you. A good internist can reassess. In particular, HCQ is for specific disorders that you do not report being diagnosed with, and has its own down sides. Gabapentin is for nerve pain that I am not sure you are describing. SSRIs are not right for everyone -- they can disturb sleep and conflict with other drugs, whereas there are other options for depression and anxiety.

Finally, the 3 drugs together can cause heart rhythm issues and/or low sodium levels, either of which could underlie the worsening weakness you describe.

I can think of numerous conditions that could relate to the issues that you started your post with, but I do not know what labs and ruleouts have been done. So again, I would advise seeing a good internist with a one-page summary of where this all began, and what changed when for how long, in conjunction with your medications (start/stop dates, where applicable).
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