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New member
Nov 5, 2018
Learn about ALS
Brooklyn Park

First off, I had been lurking here for about a year now and read the sticky note and that is why I haven’t posted anything yet. My thoughts and prayers are with you all who have this disease! My situation is a little different and would love for you some advice. Even if you told me to get lost, it might be the advice I need.

I have always been a very healthy person with all my injuries from sports and then a few stomach issues now and then. By stomach issues, I mean a couple of weeks of diarrhea and then it straightens out.

This brings to me fall of October of 2017 when I had a bout of diarrhea again that lasted 3 weeks that progressed to twitching everywhere; arms, legs, scalp. Then I lost my appetite, with that being said, I lost over 20 pounds.

Went and saw my PCP and he ordered about everything under the sun; Cervical MRI, Brian MRI, endoscopy, colonoscopy etc….During this time, they found a lump on my back which was benign and I had it removed. He also sent me to a neurologist who did an exam and had an EMG ordered for my legs. Exam went great no issues and EMG came back as normal too.

As the diarrhea and twitching persisted, I was referred to Mayo. Met with one great Dr who was very thorough and he sent me a long to the neurologist. The neurologist performed her exam and then wanted her own EMG performed. At this time, my right pectoral was smaller than my left but never really paid much attention to it.

The EMG she ordered was for my legs and right arm. It came back with no fasics and everything was normal except for abnormal findings in my right pectoral and right tricep which she chalked up to past neck issues.

I left there feeling good in January as all my twitching stopped but then started having some whacked out dreams. After a month or two had the shakes/tremor, followed by eyes blinking really fast at night for 3-4 days. Went to a psychologist a couple of times put stopped as she left the clinic. A month later my left eye would twitch off and on for about 3 weeks and then followed my right eye. Then some facial twitching upper lip and issues with right foot arch.

This brings me to my latest bout that started in August, began with horrible diarrhea again, which I still have 3 months later, then in October my right back latissimus started with some profound twitching and then started twitching all over my body and can't sleep. My latissimus twitched for about two weeks straight and I have never had something that localized and that long. Now it doesn’t twitch but it went into my right arm a little bit and I can see some atrophy in my shoulder.

Yes, the shoulder atrophy could be from my neck injury. Still have twitching all over but not as much. My right arm seems to getting most of the twitching and I’m really concerned it could be the beginning of something else. Also, my back shoulder does feel different now where I had all the profound twitching and my right hand gets colder too.

I do have a follow-up appointment with a neurologist in 25 days. This is all happening about the same time of year as before…….thoughts?!?

Sorry if I wasted your time but really respect your opinions!

Forgot to ask this...…. can an EMG change a lot in 12 months?
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Your symptoms don’t suggest ALS. Fasciculations are common, nonspecific, and meaningless.

EMGs in the past have not suggested ALS and it doesn’t sound like the neurologists you’ve seen have confirmed any weakness on exam.

I think you’re good to go in terms of not having ALS. Hopefully the upcoming neurologist appointment will reassure you.
Thanks for the reply Karen, really appreciate it!

It just feels different this time and where I had the profound twitches in my latissimus it feels weaker, yes..."perceived". I don't have issues lifting or doing any activities though.

Take care and thanks again Karen!!
I will be meeting with the neuro in two weeks now but I have a few new symptoms; where I had the profound twitching in my back, it feels like there is a almost a strained muscle at times...just a different feeling. Also, my right hand is much colder than my other hand at times, this side of my body that has been twitching more.

Does this sound familiar to anyone?
No, none of it resembles ALS, and there's no reason to borrow trouble for you. Karen has given good advice. You could try massage/stretching to see if it helps.

Thanks Laurie!

One question on split hand, can you have split hand with no weakness? My hands are fully functional and have never dropped anything but my left hand looks smaller around the thumb and I thought it was just my right hand swollen and never thought my left was getting smaller. Yes, I will mention this next weekly the neuro but wanted to ask you all first. Thanks in advance!
To answer your question, if there is split hand syndrome, there is weakness.

More importantly, your post does not suggest ALS.
Please refer to both Karen and Laurie's posts. If you have questions about your hands, best talk to your neuro next week when they can observe what you are talking about.

People are asymmetrical, which means everyone has different size r and l hands, feet, etc. Unless you had a baseline and your measurements have changed drastically, as measured by a phsyio or doctor, there's not much can be gleaned by your current observations.

Please save up your questions for the neuro so they can walk you through what they are observing. I'd also review the Do I Have ALS? Is This ALS? - ALS/MND Support Group Forums thread again to make sure you aren't continuing to ask questions already covered there.
Thank you Karen and Shiftkicker!!

Have a great night and thanksgiving tomorrow!
Well, I had my appointment today at Mayo from two different Doctors. I have no clinical weakness and all my reflexes were normal with a complete normal clinical exam. They didn’t see any Fasics until they started tapping on my muscles and then my tricep muscles went crazy. They both came to the conclusion that I have BFS and are 99.999% sure I don’t have ALS. One was 50/50 on doing another EMG and the other guy said we didn’t need to unless it was a piece of mind and it is for me so I will have it done on Monday. Thank you all for taking your time and replying, I really appreciate it!!
Outstanding news, bw. I am so happy to hear that. Please come back and let us know how the emg goes on Monday. It really helps others who visit.
I had to move my EMG to later in the week. Had the EMG on my legs, arm and back. Everything in my back and legs came back normal and my tricep is marked with damage from my neck issues and they found this last year too. There is no active denervation and no progression from last year. In summary, totally clean and nothing to worry about. Do I have Fasics still? Yes, but they are benign and a lot of people have them.

From a reflection standpoint, PLEASE listen to the people here as they give you give phenomenal advice and believe your doctors. There are so many wonderful people here who take time to answer questions when they could be doing something else. I want to thank them all for their support and having a forum like this. Words can’t describe how great full for the answers I have received and read here! Thanks again!!
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