Help would be much appreciated

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JeremyK

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Learn about ALS
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Thank you for allowing me to ask a question to the community. I've read the "important" highlighted posts, and found them well written and helpful.

In January, I started to experience random "hypnic jerks" while drifting off to sleep. In February, they became so severe that I couldn't sleep for a few days. Every time I was about to fall asleep I would be jolted awake.

In this tortured state (please forgive me) I checked with Dr. Google.

Fear/anxiety cycle started, along with daytime fasciculations, more nighttime twitching in random locations, and most troubling to me, I recently noticed a very twitchy tongue with white spots, and what looks like lesions or atrophy or perhaps geographic tongue. My tongue twitches/bubbles a lot; seen but not felt.

I would be most grateful if you would answer a few questions for me:

(1) Tongue worries we most. On the sticky it say's atrophy is a frequent early symptom, generally speaking. But when speaking of the tongue, the community say's that if you can speak/swallow you don't have tongue atrophy. Can you clarify for me? If I can speak, swallow, etc, should I stop worrying about a strange looking, twitchy tongue in terms of ALS?

(2) Hypnic jerks as onset symptom?

(3) 6% weight loss in one month? Increased spasticity?

(4) Anything else I should consider?

I plan to see a neuro in two weeks. Thanks in advance for any guidance. You're generous folks.
 
White spots on the tongue are a primary care issue. The family practitioner or internist can also look at your twitches. The two together could even be down to a new-onset food allergy, sensitivity to something acidic, or an infection.

No, if you can move your tongue normally, there's no reason to suspect nerve damage.

The jerking around sleep suggests evaluation for RLS/PLMD, which a PCP or neuro can do also. They can also order a sleep study if needed.

Weight loss can relate to pure worry, as can perceived "increased spasticity," so there's not much to hang our hat on there -- all good.

You haven't described anything that leads me to worry about ALS.

Best,
Laurie
 
Thank you very much. So would the tongue stop functioning correctly and then start twitching/bubbling in ALS?
 
People would not be able to understand what you are saying. They would think you were drunk.

Best of luck with your primary care. Forget about twitching. That can be from anxiety or lack of sleep or even nothing.

Nothing you posted suggests any type of neurological disease.
 
Thank you for taking the time to ease my concerns.
 
Atrophy anywhere on your body comes after loss of function. So if everything still works what you could be seeing is normal asymmetry. Lacking anything that doesn't work, things are looking good for you. As far as white spots on your tongue, think thrush. As long as you are in Utah, order me a Polygamy Porter, why stop at one.
 
Hello,

It's been 10 weeks since I last posted and I've been on a difficult ride during that time. I am most grateful if you'd consider my case and share your thoughts. I've re-read stickies, and done what I can by way of research.

Ongoing symptoms for me are twitching and tremors. The hypnic jerks that were greatly afflicting me several months ago still occur randomly, but nothing like they were. Now what I have by way of tremors is a sort of fast, rhytmic tremor, only noticeable at rest. I also have what I call "bubbling" sensations that also are noticed at rest. If it was just the tremors and shakes it would't concern me, but staring about two months ago I noticed my buttocks area was shrinking. I'm a pretty thin fellow, 5'10, 150 pounds, so losing weight for me is pretty rare. I started feeling so bony in the rear that sitting is now uncomfortable, especially in hard chairs.

I have also lost mass in the back of my leg, running from the buttocks area down to the knee, or so it seems to me. Now, I would expect a bony rear to happen after a decade or two, but 2-3 months and quite noticeably to me? The backs of my legs, especially on the outside feel very tight, and it also seems to me that I've lost other proximal muscles. If this is muscle wasting, it is proximal and symmetric. Most noticeable is muscle loss in the pelvic girdle and buttock area, but it also seems (although not sure about this) that I've lost it in the upper limb girdle/back shoulder area.

I understand this would be an atypical presentation for ALS, but that muscle loss can start proximally. It also seems to me that the vast majority of my tremors and twitches originate from these areas, but not all. So before, I considered it more body-wide twitching, now it seems more concentrated in areas that seem to be shrinking to me.

I also have tons of joint popping and cracking going on, that never happened before. Especially in the thumbs, knees, ankles and shoulders. Not really noticing anything in the elbows.

Since I last posted I have seen a neurologist and been examined. I had an NCS, clinical exam and had a clean EMG. The examinations and EMG all seemed quite focused on the distal portions of my body. I did complain of muscle loss in the buttocks and rear thighs/pelvic girlde. As I see it now, I definitely have loss of muscle mass in my buttocks, rear legs and pelvic girdle with a slight nod to back shoulder area. I have random bubbling sensations in those and other areas, usually around knees or fee or other joints, and then I have this rapid, rhytmic twitching that also seems to originate in the affected areas. That twitching seems to be pretty constant and feels like a motor running within me. If it weren't for the mass loss I would be thinking BFS or anxiety.

I have not lost my ability to do anything, including exercising, although fatigue or difficulty have seemed to increase for things like sitting up. Endurance is down.

So, with these symptoms (1) proximal symmetrical mass/muscle loss (2) bubbling sensations (3) rapid rhytmic tremors noticeable at rest, localed in the afflicted leg area or shoulder girdle (4) no clinical weakness. What do you think? My neuro was a general sort, not an ALS specialist, but he did test for ALS and did the EMG himself. He was quite confident this is not ALS but had no explanation for my symptoms.

(1) Given my onset would be atypical, would it still show up in EMG of 3 limbs, but not poking me in the affected upper area? (2) Would my atrophy in buttocks and side/back of legs cause clinical weakness at this point?

Other questions that seem to be hard to find an answer for are: (3) are fasics felt and/or seen? (4) Does clinical weakness/actually losing the ability to do something follow a longer period of decline or does it just happen and then atrophy?
My buttocks is way smaller. I am not making this up, so something is going on. Tons of blood tests, MRI's of most of body and sleep studies have yielded no diagnosis so far. The thyroid has been cleared on multiple occasions.

I am most grateful for your time and attention. I only ask because info seems conflicting at times and the threads I've searched usually don't deal with atypical presentation of proximal muscles. Please help me if you can.
 
A normal EMG of 3 limbs and absence of clinical weakness on exam 100% clears you of ALS.

If you have atrophy (and only a doctor examining you can determine that), then it is for other reasons. Biomechanical imbalance is a very common cause for atrophy. Also, chronic arthritis and disuse, to give examples. These conditions would not cause EMG abnormalities.

Generally, weakness precedes atrophy.

Fasciculations may or may not be felt or seen.

Keep working with your doctors, but ALS is not the cause of your issues.
 
Thank you for responding to me Karen. You are kind to do so. Can you help me with a follow up? Part of my trouble is that I've read ALS can begin proximally, but that is not typical. That makes me wonder if most of what I read has to do with a typical onset, and wonder whether it applies to my case. For example, the EMG was good but seems to test distal muscles. any thoughts on this? And of course some people post about a clean EMG and later diagnosis. How can you distinguish between its just to early to tell vs. not ALS, look for other diangosis? Also, have you heard of cases being proximal and symmetric?

My best to you and thanks again.
 
In a person who is developing ALS, denervation is widespread, occurring long before the person develops functional loss. So it doesn’t matter if they test distal limbs and your symptoms are proximal. We also tell folks worried about bulbar onset that a clean EMG of the limbs rules out bulbar, for similar reasons.

Proximal and symmetric is not ALS.

Clean EMG of the distal limbs is not ALS.

Seriously, you don’t have ALS. Hanging out on this forum and asking more questions is only going to fuel your anxiety. So at this point I’m kindly going to ask you to stop.
 
I must say it is for your doctor to do the research not you. You have zero medical training, keep going back to your doctor and let them progress research and testing based on results they obtain and examination of you.
If you take to the internet to research i can assure you that you will just chase your tail and scare yourself stupid, and then find yourself asking strangers to validate all your fears.
I truly wish you the best in working with your doctors as the answer will be something that can be fixed.
 
If it helps, Jeremy, my husband did have a symmetric proximal onset because he had the flail arm variant. Of course, his symptoms were nothing like yours because you don't have ALS. But his first EMG, which was not at a major center nor with an ALS specialist, was abnormal in all muscles tested, distal included. So, the exact opposite of yours. He had a second opinion at a major ALS center, and they did their own EMG, which showed likewise abnormality in every muscle tested.

In addition, the few people here who had a clean EMG at any point had abnormalities in function. Every one. Fatigue doesn't count. Even something as simple as anxiety or not eating properly leads to that. You state clearly that you have not lost abilities. Equally clearly, you are in the wrong place -- wonderful news. So I'm closing the thread because there is nothing more to say.

Best,
Laurie
 
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