Sorry...Im back after 2 years for reassurance

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Merepage

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Well.. I made it over 2 years without logging in...but I have renewed concerns.

History: 2012 twitching, perceived weakness all over..had 5 exams and 5 clean EMG's between then and 2015. Accepted no ALS

Fast Forward: Extreme fatigue and twitching since 2015 but no clinical weakness. April 2017 Full body twitching and profound overall exhaustion. Zero stamina to walk up stairs or wash my hair, but no clinical weakness as Neuro exam clean (2 weeks ago). Husband can't push my arms down when outstretched, but reaching for glass in cabinet getting harder by the day?? Legs so tired, have to sit after walking across the room.

Should I get another EMG? Or for anyone willing, please send a quick reassurance that I should look elsewhere for diag..Thank you to any responders.

How often does ALS start as weakness all over? I promise to not bother after your responses. Thanks to anyone willing to discuss. (Nikki)
 
Zoiks. You do have an extensive posting history over 5+ years. If you had a "classic" case of ALS, you would be profoundly disabled at this point. If you have been living with anxiety over motor neuron disease for over 5 years, you really need to get to the bottom of your symptoms.

I am not sure how the people here can give you the reassurance you need over your symptoms. A long sit down appointment with a doctor who can give you a clinical neuro test is your best bet. There is NO way for folks here to detect (nor would it be appropriate) causes for your subjective experiences.

I'll be honest, living with the fear of ALS for 5 years is a MAJOR and life affecting problem. I am not saying I don't believe you have real symptoms, nor am I dismissing your experience as anxiety- however, you need to make sure you get the anxiety sorted as well as pursue proper medical care. Either your symptoms are causing anxiety OR your anxiety is causing symptoms (or a little of both). Either way, you need to see someone for that WHILE you pursue reasons for physical symptoms.

Advice that many have repeated to folks with twitching and fatigue pursuing medical care- Don't ask your doctor "Do I have ALS?" Ask your doctor (or doctors) "Why do I have these symptoms?" That way they will look at where best to send you if they are stumped and are not spending their energy just eliminating ALS to reassure you. Either way, ask for a referral to a psychiatrist who specializes in somatoform illness (because an expert will help rule it out) or is experienced in coordinating care for complex, chronic and long term disease care. Whatever you have, you NEED to see someone to help you as you walk along a diagnostic pathway.
 
Thank you.. Just trying to living with chronic illness for over 5 years without a name has been difficult. I am not afraid of ALS so much anymore, just want some answer to this. I've been to so many physicians (psychatrists too) to get a diagnosis and I don't think there is one at this point.

I just wonder where this road is leading... I can't understand how it is so hard to reach for a glass, but my actual strength is fine. I guess time will tell if I just continue to fatigue or eventually have clinical weakness. Thank you so much for responding.
 
I think you've done the neurological workup so would check in with a good internist or rheumatologist. ALS does not appear in the picture we see.

Best,
Laurie
 
Thank you so much Laurie. I will keep searching and try my best to look elsewhere. Truly appreciate you getting back to me
 
Getting an EMG on Tuesday. I don't know how one's body can be doing all of this fasciculating and feel horribly weak and not have nerve issues. Hope thats the case! If clean, I will not be back, I promise. Say a prayer for me please! Thank you for supporting all of us scared folks out here...
 
Wishing you the best. Hope you can find your answer soon
 
I will say a prayer for you.
 
Merepage, back on 7/21/14 you posted the following,

"I have since had 5 EMG's over the past 2 years..all "clear."

Above you have posted you are having another EMG Tuesday. Usually I read all previous posts by a member who keeps coming back with new symptoms or can't seem to let go of ALS in their entirety. This time I'm going to try a short cut.... until later.

Will Tuesday's EMG be number six (6) or have you had any more since 7/21/14?

I hope the Neurologist you see after Tuesday's EMG will find some way to convince you to let go of this 5 year obsession you have with ALS.
 
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@Clearwater Al....

I have not had an EMG since 7/2015 (2 yrs). I had several (4 or 5) between 2012 and 2015. My symptoms have never subsided in the 5 years since my first fasciculation in 2012. In 2015, I decided to just live a chronically ill life without seeking anymore medical attention. A month ago I had a fever/flu and never recovered to my 5/10 health.. I was completely overcome by fatigue and had no choice but to revisit everything.

If you knew me, you would realize that I do not want to talk about this, or bother anyone with this anymore. I am still working full time (from home on laptop) but am now just too ill to fake or lead even a mildly normal life.

That is why I am back seeking an answer. Hope that makes sense. I just need to try to get back to a 5/10 as I am now at a 2. I have had EVERY test done under the sun... If I need to live at a 2/10, I want to do it knowing whether I now have ALS or not.

Would an EMG 2 years ago (with the same symptom but worse) still hold? I guess I will find out Tuesday.. THANKS for helping me with this. I know that I need to quell my ALS fear.. If EMG clean, I will not be back.. Want you to know that I Pray for all of you regularly and truly appreciate all of you
 
Please, if ( I hope it is when) you find out what is wrong, make one more post so that other people may learn from it. Thank you
 
No... I don't know you. I'll respect that you don't want to talk about this, as you wrote.

You have come back here seeking answers... many very knowledgeable members have given you answers. After 5 years of Neurologists, tests and EMGs... I'd doubt anyone here could satisfy your questions.

Look, I hope your Neurologist or any doctor finds a path for you to a normal healthy life.

Like Nikki posted above... let us know how Tuesday's EMG goes and any determination in the future.
 
Clean EMG. For all you worriers... I was totally convinced I had ALS. But I DON'T. Trust your Dr and everyone on this site. Just because you twitch, feel weaker every day, think your muscles are smaller, and don't "feel" right, you most likely don't have MND. I was SO convinced. Look and listen to why you DONT have it instead of focusing so intently on the VERY minuscule chance that you do. Peace out and thank you to all on this forum for your support. You are all awesome!
 
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