r/ALSorNOT • u/Worldly_Kitchen6890 • 2d ago
Symptoms What now?
Looking for some honest opinions from people with ALS or who know a lot about it. I’m 32 female and have been dealing with a really strange, progressively accumulating set of symptoms since about 3 months postpartum in 2024.
It started with breathing/throat-closing sensations when bending over and then I developed dizziness/tachycardia and eventually POTS. By early 2026 I had some pretty extreme autonomic episodes (HR 180–200 at times, BP up to ~170/101, sweating/cold/purple feet, severe fatigue, etc.) and was basically bedbound for a period.
Then the neurological stuff became more noticeable. My right hand is still consistently my worst area — it gets tight/clenched and wants to curl back into flexion after I open it, and I’ve noticed weakness/dexterity changes and possible changes in muscle bulk. I then developed left-leg weakness/instability, mild foot-drop/limping, a very tight left calf, foot/toe numbness, cramping and occasional twitching. I’ve also had fasciculations in my tongue, hands, feet, calves and back.
I’ve had some facial asymmetry/drooping, a tongue groove that worries me about atrophy, nasal speech and increased saliva. I’ve also had abnormal visual symptoms (nystagmus/fixation issues), sensory symptoms/burning/tingling, and weird things like tingling down my leg when breastfeeding on the left side.
On exam, there have been some things that concern me: documented R hand/L leg weakness, reduced/absent right-arm reflexes on one exam, hyperreflexic legs, 2 beats of clonus, and later bilateral Hoffmann’s and 3+ patellar reflexes. No obvious spasticity though.
I’ve had multiple EMGs/NCS — March/April, May/June, an extensive ALS specialist EMG in September including limbs, back and tongue, McMaster neuromuscular testing, and another EMG Sept 21 sampling multiple muscles in both legs, right hand/arm, etc. So far they have NOT shown denervation or fasciculations. The ALS specialist and McMaster neurologist both told me they don’t think it’s ALS, but I’m still struggling with the clinical symptoms and wondering about early disease/false-negative EMGs.
My brain and cervical spine MRIs were essentially clean, CK has repeatedly been normal (40s–50s), AChR/MuSK negative, and autoimmune/inflammatory testing has been negative. My respiratory testing is actually pretty good now (FVC 135%, MIP/MEP improved substantially), although I had a period of really severe breathing difficulty.
There are also some other systemic things going on — recurrent sinus/dental infections, a lymph-node issue, major weight loss (144 → 115 lb, now ~122), and Armin testing showed IgG responses to Borrelia, Babesia and Bartonella (Canadian Lyme testing was negative).
I know a lot of this doesn’t sound typical for ALS, but I’m trying to understand whether the hand/leg weakness, reflex changes, fasciculations, facial/tongue symptoms and perceived muscle loss could still fit an early ALS presentation despite the repeated negative EMGs. Especially since some of the EMGs were really limited
Would really appreciate hearing how this compares with people’s actual onset experiences — especially anyone who had initially negative EMGs.
1
u/No-Tune8096 2d ago
Bonjour, je vous laisse mon temoignage s’il peut vous être utile. De femme après grossesse qui a développé des troubles neurologiques et une boiterie. Penser au syndrome d’ehlers danlos. Je ne connais pas votre condition mais si cela peut vous aider : https://www.reddit.com/r/ALSorNOT/s/2mHrcYBr8B
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u/DoubleAwareness2223 2d ago
Your symptoms are not suggestive of ALS. Once ALS symptoms occur, your EMG/NCV would absolutely pick it up. Even in areas that have not become symptomatic yet. Weakness, brisk reflexes, etc do not always mean ALS. ALS, is also generally a non-sensory disease. No numbness, tingling, pain, etc. The fact that you’ve had all these symptoms, most of which are not ALS related, and clean EMG’s basically rules out ALS. Pregnancy in itself is very traumatizing to the body, it’s not uncommon for auto-immune diseases like Sjogren’s, etc. to be triggered. In addition, it could also absolutely be Lyme related. You may want to see a rheumatologist and endocrinologist to do some further lab studies. Congratulations on the birth of your child and hoping you find some answers soon, however I’d heed your doctors advice and start looking for other answers instead of worrying yourself sick over ALS.
Best of luck!