Pretty sure its ALS

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affected

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Paully your profile says you were diagnosed in January, I think that is misleading, would you mind removing it?
 

Paully50

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Hi

So for the last 2 days ive started with fasciculations in my shoulder.

The same portion of muscles twitches a few times every minute.

Its the only muscle that twitches so far. I notice it twitches if i use the muscle, like if i lift my arm or pick something up, the same little portion of my shoulder muscle then starts twitching. I know i havent done anything to my arm. Ive never seen this in my shoulder ever.

I guess this is a very worrying symptom and now means this could be ALS. I was clinging to the fact i hadnt had any fasciculations but now theyve started.

So i noticed weakness first, then some muscle atrophy, now im getting fasciculations. Is this normally the normal route for ALS. Does it start in the shoulder often then moves down the arm?

I wonder if i now have umn showing aswell if i eas tested?
 

Paully50

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hi

to be honest I’m getting worried now.

i am still getting the fasciculations in my left shoulder and whenever I use a muscle in either arm I notice that that muscle is twitching soon after until it settles down. It’s like as soon as I use the muscle even just to grab something it’s already too fatigued and starts twitching. The weakness seems to be getting worse at an accelerating rate.

the thing is I have weakness and wastage in both arms and both legs as well as absent reflex’s, so pure lmn, I currently have no umn signs. I may not have classic als but I have a feeling it could be something like pma or even flailing arm/leg syndrome. I’ve read they are all lmn only.

however, as I’m getting symetrical wastage and weakness in all limbs, surely it can’t be flailing arms or flailing legs can it? I thought those were when there is a problem with only one set of limbs and the other set are fine, so can’t be all at once. So that would just leave pma.

with pma, can you have symetrical wastage on both sides and all limbs at once. I’ve heard it’s not normal for als but wondered if was with pma?
do you get absent reflexs with pma?
 

lgelb

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You're not listening. There are many, many reasons besides ALS and related disease for your fascics. You have presented no clinical confirmation of "wastage" or "weakness," despite seeing a neurologist who is qualified to see both if they're there.

So no, you're not presenting with flail leg or flail arm variants of ALS -- and more importantly, you're not presenting, from what you say, with any variant.

PMA is ALS with a pure LMN onset. Most likely it is/becomes ALS. It is silly to talk about LMN vs. UMN and PMA vs. ALS because there are no objective results to suggest them. I gather your neurologist isn't characterizing MND as the top candidate at this time, except to do due diligence with labs, MRI and repeat EMG -- not uncommon. So I'm baffled as to why you are, given it's a disease that no rational person would want. You've had more years of leadup to your presumed diagnosis than many people here live after diagnosis.

Please don't post again until you have more test results, as it's not productive at this point.
 

Paully50

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Hi

So i had my emg yesterday. I waited until this time as requested above.

I originally thought my weakness and wastage was symetrical but i can now tell my right arm is much weaker than my left.

Is completely wasted in the brachialis and my elbow area is pure bone. I can push my finers right inside, its just a hole covered by skin. Ive measured and my bicep has shank by 1cm in 1 week.

I can no longer tense my bicep muscle. It just will not harden.

Im also getting an ache in my right shoulder when i lift my arm. The shoulder is deginitely atrophied.

The neurologist tested my shoulder, bicep, tricep, forearm, thumb muscle, calf and thigh. Just my right side but to be fair that is my weakest side.

He said he couldnt detect denervation in the muscles.

If my bicep is weakening and wasting a little and he probes the muscle in one area, is that enough or does it have to be the actual part of the muscle that has/is wasted to pick up denerving?

I just dont get it. Why is my arm so weak and thin? even typing for 5 minutes im aching from my shoulders right down to my fingers. Because i have absolutely no muscle left in the bracialis im struggling to bend my elbow. Im getting a pain in the elbow as i think the joint and ligaments are taking the strain of the failed brachialis, its job . He said he couldnt see any denerving.

He did say he had never seen a dent in the arm like mine was showing with the brachialis muscle atrophied. Thing is is also going on the other arm too, just not as bad.

Is an emg the gold test for mnd? Can it miss something. Can it be missinterpreted? He spent a good 45 minutes testing them.
 

Nikki J

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Yes an emg is considered the gold standard. it doesn’t matter what part of the muscle. The muscle is affected or it isn’t . In ALS not only the clinically obvious areas of muscles show on emg the surrounding area of muscles does too. A 45 minute emg means he looked very carefully.

that doesn’t mean you have nothing wrong. It means that whatever it is it doesn’t show on emg. So you have neither ALS or PMA. Your lack of umn signs says not PLS ( which you never thought I know) so it isn’t MND and your answers are not here. You need to continue to work with your doctors asking what is wrong

good luck.
 

Paully50

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Hi Nikki

Thank you so much for replying. Im at a loss as im losing the use of my right arm as the weeks go on. He actually said my right bicep reflex was normal, so im showing less lmn signs in this limb than the others. They were still absent.

I cant even lift up a kettle anymore. I cant even eat a meal with my right hand as its too painful when i bend my elbow and lift my fork. I have no idea whats causing it and why all my other muscles are atrophying at once. My shoulders look horrendous from the back. Ive now lost 30lbs, and most is muscle. My arms and legs are just bone.

I did wonder if it was this parsonage-turner syndrome but that sounds more suddem and much more painful than mine.

Im totally lost what it could be. Ive had tests for autoimmune and its not that. Ive been getting weaker for 2 years now.

On another note, i was a guinea pig for a test they are working on in the neurology department at my local hospital. I still had the normal emg and nerve study, but they then asked if i was willing to spare 30 mins for a new test. They used these aparatus that clamped to and analysed my muscles. The process was called eis i believe. They also tested limb strength, did ultrasound on my muscles, grip measurement, and also nerve test. Unsure how and they didnt tell me much about it but the equipment was very expensive. If successful im unsure if they intend to use it instead of or in conjucrion with emg.

There was absolutely no pain with any of the new tests unlike the emg which drew alot of blood that ran down my shoulder.
 

Nikki J

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Possibly what we call eim. I have had it in research studies. There was hope that it could replace emg and they did both an emg and an eim in the studies. anyway you had a ton of testing obviously. No denervation = not ALS so you need to let them keep working on it. I understand it is frustrating but we really can’t help you. There are many diseases but we only do MND here.
 

Paully50

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Hi

Could i ask just one last question.

Ive been chatting to alot of people and they are stating the emg missed their mnd. One person said she had 4 emg's and none ever found anything.

Is this true? Can an emg easily miss mnd? They said it has to be active denervation. What if mine wasnt?

The reason im asking is my arm seems to be getting worse. I cannot flex my arm muscles anymore. Its much weaker than my left and much thinber. My shoulder is weak and im even struggling picking up a kettle. I feel like i have concrete gloves on my right hand, it feels so much harder to raise my right arm.

I have this horrible feeling the emg has missed it.
 

Bestfriends14

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Can you please stop. This is not a site for health anxiety or general health issues. You have both, which means a site for MND is not the place to raise questions or try desperately to get handholding for your nosophobia disorder and treatable health issues. This is site for those with ALS and their caregivers, of which you are neither. As such, your time would be better spent at your docs getting answers there, as opposed to continuing to needle dying folks.

Best of luck to you and take good care.
 
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Clearwater AL

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Get Real
You have posted 11 messages, you have had 24 replies.

This Thread has blundered on for two pages.

I have read all your messages. My opinion... you are doing
nothing more than playing with the members who have
responded... holding your health anxiety hand.

I hope others in the future reading your ramblings don't
take this on as some sort of entertainment or sport.

This is a serious forum concerning ALS and help those
concerned... to a point.

"Could I ask just one last question." Answered.

Log off from here... you do not have ALS.
 

Nikki J

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Your questions about too early and the supposed negative emgs reported prior to diagnosis were all addressed in the read before posting thread. We wrote it so we wouldn’t have to keep repeating ourselves

i am closing this thread and ask you not to start another unless you are back reporting a definite diagnosis. It is helpful to others to see what it was when it wasn’t ALS
 
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