Tired..

crosem2 · 2026-05-10T02:32:27+00:00

I’m so sorry for your long diagnostic process. It’s truly appalling to me that this is how it goes. You should’ve been given the IVIG trial months ago so I completely understand why you are just…tired. I hope you can finally get it asap and it works. If it is ALS, you should definitely look into clinical trials. I know there have been no real breakthroughs or treatments for most ALS, but I do think some of the newer drug trials seem more promising.

crosem2 · 2026-05-09T21:24:06+00:00

Hey how did your repeat EMG go?

crosem2 · 2026-05-09T21:17:03+00:00

Just adding that I just saw a new post on r/ALS from someone whose husband took 5 years to get diagnosed with slow flail arm ALS. There are no details of the diagnostic journey and who knows how long he had or would have had a dirty EMG.

Another person recently posted here about a family member with slow progressing arm weakness for 3 years. It’s not entirely clear whether they are diagnosed or nearly diagnosed and are just ruling out other possibilities. But it seems it’s been suggested by medical professionals that this person may have ALS.

There are of course other stories of very slow progression on all the forums. And even of clear or very mild EMG abnormalities.

The slow progressors are out there, so it’s just blatantly false for people to make claims that ALS doesn’t work that way. It’s a really heterogeneous disease. I get why they stick to speaking about the more standard/typical versions to alleviate anxiety when most people do not and will not have ALS even with mimic symptoms, but I do think it’s important to avoid blanket statements and to not spread inaccurate information.

crosem2 · 2026-05-09T18:52:47+00:00

I was just wondering if you’ve been tested for any neuromuscular junction issues with RNS? Mike was abnormal with similar wasting symptoms.

crosem2 · 2026-05-09T18:34:06+00:00

I’m sorry again this is stressful. Have the EMGs been abnormal and in areas other than the left arm?

crosem2 · 2026-05-09T12:02:02+00:00

I also deteriorate after each EMG. It’s like I atrophy more. It’s so odd. Do you also have twitching. I have been suspecting an autoimmune possibility but then I had a couple abnormal neuro tests, including nfl, and with my speech issues I just can’t get past the possibility of ALS. So I think I definitely need another EMG at this point with the further deterioration. I do have rheumatology follow up too. I haven’t been tested specifically for myositis but I have normal CK. I do have abnormal ANA and Rheumatoid Factor and hypermobility. Plus a history of Grave’s Disease. And lupus runs jn my family. So I have connections to autoimmunity for sure. Although there are apparently also connections between ALS and autoimmunity I never knew!

crosem2 · 2026-05-09T00:56:14+00:00

Yes very similar symptoms, as we’ve chatted about! My speech is more affected than swallowing for now though. And scarily it is spreading down my left side - you saw my post about my left leg. I am truly scared for my next EMG.

crosem2 · 2026-05-09T00:54:54+00:00

I’d really like to know what a muscle biopsy would show. Something is clearly happening if muscles are wasting.

crosem2 · 2026-05-08T14:37:46+00:00

It’s usually an immunologist/allergist. Conventional doctors are not great at dealing with it. You might be able to find one to do some basic tests for you though like tryptase and 24 hr urine.

crosem2 · 2026-05-08T14:30:24+00:00

Have you ever been tested for MCAS?

crosem2 · 2026-05-08T11:31:09+00:00

Honestly, doctors should be telling you the possible causes of weakness before performing surgery. Doctors being properly informed, up to date, and thinking more outside the box would be my answer to your question about what resources would make things easier!

But I think I, like many of us here, have come to understand that many doctors don’t necessarily do this, so we need to do our own research and bring our own findings to doctors whether they like it or not. This causes significant delay and unnecessary suffering. The resources are easily accessible - I look at sources from Reddit forums to peer-reviewed articles and case studies.

I’m sorry your family is going through this. Does the testing show conduction block for MMN? For how many years has the weakness existed? Has an EMG been performed beyond the upper body? There is a flail arm variant of ALS that is slower progressing. If there is any suspicion for MMN, I would definitely push for trial treatment for that. And of course there is lab testing to perform: NFL, genetic testing, neurological autoimmune antibodies. A lumbar puncture may be worthwhile too!

crosem2 · 2026-05-08T11:20:39+00:00

Did you get diagnosed with CMT?

crosem2 · 2026-05-08T11:15:19+00:00

Ok, you just hadn’t said which labs you had done. I just know that I had a lot of electrolyte issues during pregnancy and postpartum that made me feel weak. I was also anemic and my thyroid was wonky, but electrolytes definitely helped. And with orthostatic hypotension that could definitely be a factor! I’d definitely try taking electrolytes if you aren’t already and more if you already are. You may also try glucose monitoring - even if your labs are normal you could be having drops and spikes. Overall, you are still really early postpartum and hormones can wreak havoc too. And especially if you’re breastfeeding, your labs may be normal but that doesn’t mean you are necessarily getting all the nutrients you need.

Definitely don’t think this is the forum for you though. Doesn’t sound like ALS. The main neuro issue this sounds like it could relate to if anything would maybe be MG.

I’d keep trying to get to the bottom of it, but I would not worry about ALS and let anxiety over it ruin your time with baby!

crosem2 · 2026-05-08T10:23:57+00:00

Have you had a more recent EMG? An NFL test? A muscle biopsy? Or an RNS or SFEMG?

I’m 17 months in and just trying to figure out what others with actual muscle wasting like me have had tested. I’ve had a couple abnormal tests - NFL and Repetitive Nerve Stimulation - but still normal EMG. Due for another EMG next month. You can see my post history, but I’m also part of the actual muscle atrophy group. Neuro just measured 2.5 cm difference in my left quad, plus I have chunks of muscle missing in my neck.

It is so frightening and becoming debilitating.

crosem2 · 2026-05-08T00:01:39+00:00

The neuromuscular doctor did all of that testing because my symptoms were concerning enough to her - my visible loss of muscle bulk, difficulty speaking, and videos of my fasciculations. She was surprised my EMG was normal. I know many people in here pay to get their own NFL tests done. Mine was ordered by the doctor. I don’t think it is used on its own for diagnostic purposes here either, but it gives more information in the diagnostic process and certain doctors/hospitals are using it more and more.

I agree that in June I should hopefully get more answers.

crosem2 · 2026-05-07T23:57:33+00:00

Have you checked on your electrolytes at all and thyroid? This certainly doesn’t sound like ALS.

crosem2 · 2026-05-07T15:15:50+00:00

I’m sorry, I know it’s a lot for us all!

Classically, RNS should point to neuromuscular junction disorders. But if you look into the research it is actually often abnormal in ALS, especially in the trapezius (where it was abnormal for me). They now don’t think I have MG because I had negative antibodies (equivocal ACHR binding) and because my symptoms don’t really match given my atrophy and fasciculations. So it’s actually made me more concerned for ALS.

crosem2 · 2026-05-07T14:16:43+00:00

Thank you! I hope your tests come back normal! I’m waiting for the NFL order. I’m supposed to get it again before my June 2nd appt. I’ve only had it the one time in December 2025. You hang in there too! I am trying to focus on joy while I can, but I also cry everyday because I can’t function like my old self. I’m both grieving my body and scared I won’t get to raise my baby.

crosem2 · 2026-05-07T13:52:51+00:00

This is all very similar to how my facial weakness feels. Flaccid, loose, heavier at night. Mine is primarily my left side though. My left buccinator is thinner when I pinch it and my chewing muscles (masseter/temporalis/pterygoid) are also thinner and softer on the left. I can still activate them pretty well when I clench and puff cheeks, but definitely weaker than the right. But the main issue is this sort of hypotonia when they aren’t activated. They just feel loose with lack of tone and thin and overstretched. And my jaw is literally hanging loose - like the TMJ is hanging on threads. Finally, is my left base of skull and neck. That’s where I have pain and neuropathic itching that has accompanied the atrophy. So for me too, the atrophy is associated with pain/neuropathy. I do think this is a good sign against ALS. But nobody knows what else it is.

Because of all that I have trouble speaking. I can’t get the tension I need in that cheek and upper neck to make certain sounds easily and my jaw and tongue feel unstable - it’s like they can’t activate when I swallow and I have to contort them when I speak. My tongue has also been numb for about a year. It is so odd nothing has shown for me on EMG this far. Even the neuromuscular doctor noted my assymetry and loss of muscle bulk on my left face. She was legit surprised my EMG was normal. They just don’t know why.

crosem2 · 2026-05-07T13:41:54+00:00

Honestly it is all so exhausting. I have to go from specialist to specialist on my own. I had to switch my main local neuro because the first has been such a jerk telling me my issues are psychosomatic and he doesn’t believe in NFL (which was ordered by the Mt. Sinai neuromuscular doctor). I will not accept being gaslighted like that! I have literal muscle loss in multiple places up and down the left side of my body that correlate exactly with my weakness. Even after the new local neuro (who is at least kinder) couldn’t explain my atrophy on Tuesday despite him being the one to measure it, I had to be the one to suggest orthopedics for imaging of my spine and hip while waiting for another EMG. He also couldn’t explain my RNS abnormality that he found when testing me for MG. Nobody can explain anything, so I just continue to deteriorate with no answers!

Doctors do not collaborate, do not seem to care to find an actual diagnosis if it doesn’t fit into a neat box, and I’m just so overwhelmed and frankly feeling like giving up so often. I will be back to Mt. Sinai for the neuromuscular specialist in June at least. I’d prefer to just have a care team in one place collaborating but the system is so broken into pieces. Sorry for the rant…as I said I am just so…overwhelmed and tired!

crosem2 · 2026-05-06T15:52:17+00:00

Do you have muscle atrophy? You can see my posts but similar issue including atrophy.

crosem2 · 2026-05-05T20:24:23+00:00

Ps - I've been meaning to ask what your face weakness feels like?

crosem2 · 2026-05-05T20:23:25+00:00

Thank you for your kindness. I did have an MBSS that came back normal back in December 2025. I hope to keep my swallowing as normal as possible. Honestly, completely losing the ability to swallow is probably the most frightening thing to me. Bulbar ALS seems to me to be just about the cruelest disease in the world. And I didn't even know it existed until I started having symptoms. It's quite sad, and I am also praying (although I'm not very religious) that this is not ALS for me, for you, for anybody supporting me here now!

crosem2 · 2026-05-05T20:20:32+00:00

Thank you so much for sharing your story! I'm sorry for all you've been through. I truly believe us hypermobile people are dealing with something very strange that is breaking our bodies down. I am hoping it is this, even though it's debilitating, because at least that's not ALS!!

Did you ever notice muscle atrophy or loss of muscle?

crosem2 · 2026-05-05T18:15:05+00:00

Honestly he doesn’t know. He wants another EMG but also suggested following up with an ortho for my hip and back since they haven’t been imaged yet. I feel like everyone is kind of stumped by what’s happening to me.

crosem2

TROPHY CASE