u/crosem2

I’d just like to say that I think this subreddit needs more moderation. I don’t think I’ve seen the original moderator posting much lately and I’m not sure how active you are these days, but this subreddit seems to be getting out of hand lately. There are specific commenters who are mocking posters over and over again and acting as if they are experts when they are simply other regular people on here with their own issues.

On the opposite end of the spectrum, I’ve also noticed an uptick in people posting who only have twitching. I wonder if there should be a requirement to have at least one additional symptom beyond twitching to post?

Perhaps having more than a single moderator to handle such a big task would be helpful.

Hi all, I tested positive for one IgM Band - P39 - on Labcorp testing done by a rheumatologist a few weeks ago. I have issues with EBV, so I'm not sure if this is cross reactivity. I do have a dog that brings in ticks but have not noticed any attached to me. I've ordered a month's worth of Doxycycline because the doctors aren't treating me, and I am not sure if I should start it. I am already dealing with intense, undiagnosed neuromuscular issues, and I'm very worried getting Lyme on top of that all.

I also have a lot of newly developed sensitivities and MCAS issues since covid, and I cannot handle any herbal protocols right now, so I feel very lost at the moment. Lastly, I am pretty poor and cannot afford a LLMD. Any guidance or insights would be much appreciated!

Has anyone found a way to heal or rebuild loose and weakened connective tissues?

This is happening all over the left side of my body. My joints make ripping sounds and my cervical spine has no support, clunks around, and causes me a lot of pain. My left jaw feels like it’s hanging on by threads and causes face pain and difficulty speaking. This also comes along with weakness and muscle loss around the areas of joint instability.

I know some have tried peptides on here. I hate that we have to resort to experimenting because doctors aren’t helping. I already try to treat MCAS and histamine issues. But ever since being pregnant last year I’m falling apart - literally - like the glue of my body is disintegrating. I’ve been convinced I have ALS but I’ve been tested multiple times and it seems to have been ruled out for now at least. Although the fear lingers.

Has anyone found success with immune modulation or immunosuppression? I have elevated ANA and RF, so I’m wondering if this could help. But I’m also feeling like I might need regenerative meds to rebuild lost tissues. And I have issues with EBV and Varicella reactivations so immunosuppression frightens me and I feel stuck in a loop.

I am really suffering these days and starting to feel hopeless blah.

I know some have been following my story, so I thought I’d post an update in case anyone is interested. If not, no worries. I’m just a stranger on the internet ha!

Background: (42F) I’ve had twitching and progressing weakness and loss of muscle bulk for about 1.5 years, particularly impacting the left side of my bulbar region - my neck and my left jaw. My swallowing is strange and my speech has become effortful and it’s harder to say certain sounds and to speak as quickly as I could because my left cheek and throat are mushy and loose (for lack of better terms). My neck is weak and becomes tired easily when speaking as well. I’ve also had mouth numbness. Beyond the bulbar region, I’ve had some issues with my left arm and weakness and loss of muscle bulk in my left leg, which has become less stable and harder to use the past couple of months.

I’ve had multiple normal EMGs and have had a lot of labwork, including whole exome testing, with the main abnormalities being:

-Slightly elevated NFL: 1.74 (ref. <1.69)
-Slightly Elevated ANA
-Slightly Elevated RF
-Low B12 (I assume this was a result of my recent pregnancy)
-Abnormal Repetitive Nerve Stimulation Test of Trapezius
-Measurable loss of muscle bulk in left quad

Current Update: I was told I do not have ALS!
I had a follow-up visit with a neuromuscular ALS specialist June 2nd, and I had another normal EMG although it wasn’t as extensive as I’d hoped. He only did 7 muscles this time. He told me before the EMG that I don’t have ALS based on exam and previous EMG from Nov 2025. But he also isn’t sure what’s wrong with me. He seems to think I have connective tissue issues and damage in my neck - he asked if I’d been in a car accident. I did have an issue with mild whiplash back in 2023. My cervical MRI didn’t show anything too bad, but my neck is in pain and my spine is always clicking and getting weaker and weaker.

New findings:
-My NFL came down to 1.48
-Normal EMG
-Repeat RNS didn’t show abnormal amplitude decrement this time - still showed slightly abnormal area decrement, but he called this a normal test overall.
-I had a very jumpy left arm. So I had unilateral 3+ left arm reflexes and he doesn’t really know the cause. And bilateral 3+ knees. Other reflexes normal.
-My left leg was noted as slightly weaker but still rated 5/5 clinically.
-He noted laxity in my left jaw (I was glad he noticed this because it’s my most debilitating symptom). And overall more hypermobility/laxity in my left side and was just like “that’s interesting.”
-He noted findings consistent with small fiber neuropathy.

My thoughts:
I wish I could understand what’s happening to me. Despite being told it’s not ALS, for which I’m truly grateful, I’m progressing and losing muscle and function. I still feel screwed and am grieving my body’s losses while trying to adapt. I do know my muscle loss is also happening along with ligaments/tendons stretching and weakening, so I will be following up with rheumatology and an oral maxillofacial surgeon as next steps for now. I will try to get treatment for small fiber neuropathy at least. And I will see a spine doctor and try to find someone knowledgeable about long covid and Ehlers Danlos.

I hope this LONG post (sorry!) is helpful to anyone also trying to figure out what’s going on despite being told it’s not ALS.

This is sort of an odd post, but I was wondering if anyone ever heard any updates from this OP after muscle biopsy? Seems to have disappeared after having such concerning symptoms. I hope they’re ok!

https://www.reddit.com/r/ALSorNOT/s/1LQYQE4hBX

You can see my history (and photos of my atrophy) on my profile. But basically I’ve had symptoms since Fall 2024, beginning with twitching, that have continued to progress to muscle loss and weakness, and most disturbingly trouble speaking and some issues swallowing.

I had a regular neuro appointment this morning, and I have measurable loss of bulk by my neuro in my left quad. It’s 2.5cm smaller than my right. It shook during clinical, feels unstable and like walking a bit on a stick with a wobbly knee, and shakes when walking downstairs but still doesn’t count as clinical weakness on exam.

It has been weak for about a year now but had stayed fairly stable until the last couple of months, during which it has progressed more and included much more focal twitching and loss of bulk. I also have some burning pain in the thigh, a loose/popping hip, and off and on tenderness of my lower left back. This feels similar in process to what’s happening to my left neck and base of skull.

No explanation for the loss of bulk though. I will have another EMG June 2nd with the ALS specialist (last one was November 2025 and was normal). I have also made appointments with ortho for imaging of my back and hip. So far my imaging has been limited to my brain, face, and cervical spine.

But this along with loss of bulk in my left cheek and neck, increased difficulty speaking, a slightly elevated NFL, and an unexplained abnormal RNS test of my trapezius is all very frightening.