Could this be ALS?

[Jonathonkorn]

Hi I’m a 22 year old male. Been having horrible weakness and twitching in my right extremities for about 17 months now, throughout the course of the 17 months I’ve become short of breath on my right side harder to hold stuff and harder to walk on my leg. I twitch only in the extremities that feel week, and my right jaw twitches and is so weak I can now have trouble chewing. 2 months in I had an EMG and it was negative. Clinical study was great strength wise. 6 months in, another emg, clean and clean clinical study.it’s now been 17 months and the symptoms have only gotten worse, could an EMG have changed from 6 months to 17 months if I already had a test? When all of this started I was 160 lbs, my main question for this thread is is it possible to gain a lot of weight while having ALS? I am now 17 months in and am 205 lbs so have gained 45 lbs in this and I know one of the main signs of ALS is weight loss so just wondering. Thank you so much for anyone who takes time to answer this, appreciate all of u

 

[Nikki J]

There is nothing in the disease process of ALS that would make you gain weight. Can you account for it by change in diet and exercise? If not have you had a thorough metabolic/ endocrine workup? Some of those conditions could account for both weight gain and weakness

 

[lgelb]

Just gaining that much weight can affect your breathing and endurance.

I agree that a metabolic/endo workup is a good idea. I would also see your PCP in part to make sure you are not retaining fluid.

 

[Jonathonkorn]

Hi thank you so much! I know it doesn’t cause you to gain weight but my question would be, is it possible to gain weight while having ALS? Or is it automatic that you lose weight due to muscle loss? Thank u so much.

 

[affected]

You need to really talk with your doctor.
Your question isn't helpful as you have not been diagnosed with ALS.
You need to ask what is happening with you, what is on the table, and how any symptoms, clinical exams and test results work to build up your picture. Only your doctor can really work through this with you.
I hope that helps.

 

[Clearwater AL]

Jonathonkorn, you may have picked up on the thread...

Is weight gain bad for weakening legs?​

With ALS... it is a complicated circumstance down to male versus female, Peg, Bulbar, limb onset,
original weight, still mobile versus PWC. This really is an issue you need to consult your Neuro with.

 

[lgelb]

Yes, it is possible to unintentionally gain weight and have ALS. But for the same reasons as everyone else, not as a sign of ALS.

 

[Jonathonkorn]

Waiting 2 months to get to the doctor sadly but finally have an appointment booked! Just had one last question just so I don’t use an EMG test slot that could be used for someone who truly needs it, is it possible to have 0 clinical failure 17 months into when your symptoms started and still have ALS? Thanks so much again just don’t want to use an EMG test if you guys don’t think its possible. My symptoms are twitching cramps (feeling of weakness but no clinical weakness on exam or failure in day to day life with any tasks) all have been going on and progressively gotten a little worse over the course of 17 months

Also to keep in mind I had an EMG at 2 weeks upon symptoms, 6 months upon symptoms. Only abnormality was ulnar nerve slow velocity. It’s now been 11 months since my second EMG and all my symptoms have gotten worse honestly. Had an MRI to clear MS and an blood test to clear MG. I have significant right eye involvement where it feels tight dry double vision stuff like that. I’m waiting 2 months so I’ll obv ask my doctor when I see him but just for the now, are any of you aware of symptoms that somewhat Mimic ALS that isn’t MG or MS? My GF notices my eye looking smaller than the other or slight droop on my top eyelid but the MG Blood test being negative and me having twitching all over has me feeling lost as to what it could possibly be. Thanks

 

[affected]

Pretty much no. ALS is all about failure.
How about you ask your doctor if you need an EMG and then take medical advice.
We are not here in place of that. Work with your doctors, discuss your concerns at the level you are giving us.
All the best.