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SNicole 02-13-2018 10:57 AM

Genuinely Concerned

So my concern started about two months ago when I was 5 minutes in exercise and suddenly my arms became heavy to the point it was hard for me to even pick up my water .(and yes I ate well that day and was hydrated). This has happened before and I had ignored it, but this time I felt like I had absolutely no control over my body which is what scared me the most, i even sat out the rest of the hour, feeling completely frozen. I am healthy and go to this class (Lagree Fitness) at least 5 days a week so theres most definitely not a physical problem. ALS didnt even cross my mind at this point though, I have had previous symptoms of MS so I went to the ER and they did and MRI and no lesions appeared.

Skipping to one month later , my speech is getting so frustrating. I mess up constantly with my “s,ch,th, etc). Ive actually started to purposely slow down my speech when talking to others to make sure I hit all of my consanants correctly. I know numbness typically isnt described in als but my cheeks and upper lip have felt so tight (im assuming this is what botox feels like). This tightness started before my speech issues began. I keep wanting to think that this is all in my head , but every time I try to forget about this issue, it appears again, so now I am truly worried. I believe in ‘mind over matter’ but its not working this time. One question that I do have is , once I mess up a phrase, typically I can think it over and say it again correctly, so should I be worried? I am younger than 30 but the non-stop symptoms do bother me, even with Bulbar being as rare as it is.

And thank you beforehand, I have a neuro appt set up, but I also would like to hear from personal experience if anything Im saying is familiar .



Nikki J 02-13-2018 11:36 AM

Re: Genuinely Concerned
My sister only got worse when she tried to repeat something. I do not have bulbar issues but find the same thing with my problem areas. I will think ( even though I know better) that I just need to try harder. It never works.

Nor does arms feeling heavy hard to pick up water sound familar. I felt/ feel fine but one isolated area stopped working ( ankle) and it spread from there slowly What are your arms currently unable to do?

Good luck with your appointment

SNicole 02-13-2018 11:43 AM

Re: Genuinely Concerned
So the arm issue happens randomly. It is perfectly fine in daily activities but it has days where it happens, I never know whens its coming on becaus it happens suddenly. I think at this point it is my speech that is really getting to me.

Thank you so much! If it were ALS would it have gotten progressively worse or is it normal for the issues to start out slow in the beginning?

Atsugi 02-13-2018 11:55 PM

Re: Genuinely Concerned
Nope. Nothing there seems remotely ALS-like.

"....issues start out slow in the beginning?" Interesting way to think about it.

ALS is a brain disease where the nerves which control the muscles are destroyed. When ALS attacks a nerve, its muscle doesn't get the 'go' signal, so the muscle doesn't contract as it should. The nerve will never, ever get better over time, so the muscle won't work any better, either. It just gets worse. You can't make the muscle work better by resting it, or by thinking about it. It ain't gonna work, because the nerve in the brain is destroyed.

SNicole 02-14-2018 12:12 AM

Re: Genuinely Concerned
Thank you bud! It’s just coming down to the wire where I wouldnt know what else it could be , and yes Ive done my research lol:) The neurologist at the ER said i was a “Zebra” , stating that my symptoms fall into many different categories and this is why she recommended a neuro clinic. (The ER was before my speech issues) I had a concussion three months ago, so I wouldnt really think that it would just now be affecting my speech. Pretty much open to any opinions at this point. Trying not to worry but my speech hasnt improved so its getting hard. Just got back from Disneyworld and I feel like I ruined the trip.

SNicole 02-14-2018 04:32 PM

Re: Genuinely Concerned
If you dont mind me asking, is it possible to start messing up with certain consanants, or would you typically have the ‘drunk slur’ right away? Im very lispy and my cheeks feel like jello so its bothersome. Thank you

lgelb 02-14-2018 05:02 PM

Re: Genuinely Concerned
I would not rule out the possibility that your concussion is still having an effect. That is not uncommon. If you never had brain imaging, you might want to ask about that, and speech therapy as well.

But the others are right -- we don't see ALS in this.


SNicole 02-14-2018 05:22 PM

Re: Genuinely Concerned
Thank you , much appreciated! Yea the last time I had an MRI was prior to the brain trauma so who knows what going on up there lol.

KimT 02-14-2018 05:49 PM

Re: Genuinely Concerned
I suggest you go to a neuropsychologist and get tested for traumatic brain injury. They will do all kinds of tests and this will help your doctor determine what is wrong.

Absolutely nothing you posted sounds like ALS. It doesn't come and go. It just keeps getting worse.

SNicole 02-14-2018 09:49 PM

Re: Genuinely Concerned
Thanks girly, hopefully whatever this is gets solved soon enough. Driving myself nuts.

SNicole 02-17-2018 12:07 AM

Re: Genuinely Concerned
Went to the Neuro today. He is ordering and EMG. Theres many more symptoms that I haven't quite mentioned on this forum. I believe the examination went well, he said it doesn't look like anything severe, but did say it looked like a neuromuscular issue. Had a quick question about twitching (I know you get plenty of these:) . Ive never really cared about twitching until now, its getting very very annoying. My lower thigh/above knee goes off like crazy 10-30 minutes daily and now its worked its way up toward my hip...the spasms feel very powerful at times. Even when I get up to walk they keep going non-stop. The whole side of my thigh twitches and it keeps me from relaxing. Are ALS twitches typically small or are they crazy and last forever like mine?

affected 02-17-2018 04:39 AM

Re: Genuinely Concerned
Typical ALS is about failing not twitching.

I'm thrilled your neurologist says it doesn't look like anything severe.

Please do come back and let us know what the diagnosis is once the testing is done and I wish you all the best in a long and wonderful life :)

Livealot 02-18-2018 02:31 PM

Re: Genuinely Concerned
My husband has progressive bulbar palsy. His was noticeable after a really bad cold. His voice sounded like he had laryngitis afterwards. We saw our primary doctor , many times , many tests.She recommended an ENT , more tests, MRIs and lab work. He recommended a specialist in Dallas. He did more test. We were seeing a speech therapist , he said we needed a speech pathologist. We saw 4 nueroglist .This took over 2 years. He never slurred his words ,or mispronounced them.His voice just got worst.He never had a lump in his throat. He hasn't spoken in over a year and now has a feeding tube .BTW he still feels OK.Please don't think you have this disease. Find a good Dr and enjoy life.All the best to you.

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