Fast progression and both limb and bulbar onset?

[Nikki J]

No the emgs were not done too soon. If your atrophy was caused by ALS you should have both weakness and EMG changes. You have no upper motor neuron signs either No umn signs and normal emg say no ALS Or other MND

I am sorry you don’t have a diagnosis yet. There are many diseases - you don’t have MND so we really can‘t help you here. You need to work with your doctors and ask what is wrong with me. Pick the doctor you trust most and follow their plan.
when you have a diagnosis feel free to come back and tell us what it is.

good luck

 

[Bestfriends14]

I'm going to be quite firm in my reply this time. You don't have ALS! Your 3 EMGs, clean clinical exams and non-ALS symptoms attest to this. Why you needed 3 to begin with is beyond me. You're taking precious resources and time from those who actually need those exams.

As for your time here, it's done and you need to be moving on. To answer your question, no, EMGs cannot be done too early. Take your answers of no ALS and be grateful. You're 21 and wasting your life chasing a disease you do not have. How terribly sad. If you truly had ALS, wearing an oxygen mask for 6 hours would most likely have killed you. I'm not going to explain why, but when breathing issues are a result of ALS, straight up oxygen can be deadly.

Deal with this good news of no ALS and move on. Please seek counseling if you cannot let this truly unhealthy obsession go.

Good bye and good luck.

 

[lgelb]

Like the others, I don't associate ALS with these findings, but if your current hospital is not up to the task, I would find another, or ask for a consultation with a physician outside the hospital.

All the best.
--Laurie

 

[Androidlll]

Thanks for you all for the couragement and I truly appreciate your support. I had some blood test after my third EMG and it showed I have slightly positive anti-sulfatide, anti-gd3, anti-gm3, and anti-gd1a antibodies. I have no idea what they might indicate and my next neruo appointment is next week. I don't know what I have, but the constant twitches, decaying muscles, and extreme fatigue are really alarming to me. Today I walked 1km and felt out of breath and fatigue is unlike finishing a workout, it is just relentlessly draining in every muscle. Anyway, I will report back if get anything new, thanks.

 

[lgelb]

Depending on what the titres are and the ratios, positive tests could suggest a slowly-progressing polyneuropathy. If that is the case and it is immune-mediated, there are treatments that could help.

 

[Androidlll]

Thanks Laurie for the info! Reporting back... TBH I just had a very unsatisfied neurologist appointment. Since both my 3rd EMG and blood test didn't show any alarming signs(or "almost perfect" phrased by my neuro), him and his assistant immediately tried to prescribe me a month worth of anti-anxiety meds which I flat out refused... Anxiety isn't supposed to downgrade my muscle strength from doing 50 squats/push-ups to only a few or running dozens of kms to a few hundred meters or melt the muscles away on my legs, arms, and, and tongue (I have squashy tongue now, feels like pure fat. It trembles uncontrollably if I stick it out). Yet I don't have failures, slurred speech noticed by others, or UMN signs so far, which has made many neurologists dismiss me very quickly. BUT I am positive that I am gonna reach failures eventually if there is no correct intervention or it is some form of MND since I have been progressively losing muscles (twitching as well) and getting weaker since July and not a single day of improvement no matter how much I ate and what methods I tried. Sorry I am ranting a bit below... I am just angry now, angry why all this is happening to me at 21, angry no doctor has given me actual help, angry I can't explain to others what is going on with me.

 

[Bestfriends14]

Please go get help for your anxiety. You have no symptoms of ALS, yet are trying so very desperately to get a diagnosis for a disease you don't evidence having. How very sad. No one but you believes you have ALS; does this not tell you something?

The issues you describe are not indicative of ALS, yet you dismiss very knowledgeable people, basically stating you know more than them. May I ask, then, if you know more than a neurologist and the folks here, why not just diagnose yourself with MND?

I have seen countless threads in this subforum from folks who have said "I know I have MND and the neurologist testing me is incorrect". Not one of them ever did have ALS, they just continued to pester dying folks with incorrect facts and non-ALS symptoms until their threads were closed and they were banned. Please keep that in mind. Your symptoms scream anxiety and not ALS. Take your neurologist's advice and get the prescription.

Best of luck to you.

 

[ShiftKicker]

While it must be very frustrating for you to have no answers, your needs are way beyond the scope of this forum. You have been provided with lots of advice and guidance on where to look now by the members here. Unfortunately, while you may find it hard to move on from asking the folk here for continuing advice because you fear ALS, it will not help you track down what the cause of your symptoms really are. For that you must continue to seek medical care in person with doctors in your area.