Possible ALS

Endurance Ed

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Hello All!

I am brand new to the forum & I greatly appreciate all the info and knowledge this forum provides.
I’m a 56 year old, extremely active male. I’ve been an endurance athlete my whole life, with near perfect health throughout. Run & cycle countless miles each year. Over the last two months I noticed I’ve been extremely tired & lethargic & I have what feels like a deadening of my upper front left leg, along with muscle ridgity thru both legs & loss of muscle strength. Most concerning, especially to my primary doc, is a noticeable loss of pincer strength in my right hand. Trying to use nail clippers is close to impossible & writing is difficult. Have to wait until Sept 13th for my neuro appt. Scared as hell, of course. But in the meantime, I’ve still been riding my bike 100-150 miles a week. I’m putting all the miles in, telling myself I’ll be ok. I have always dealt with anxiety issues & they are greatly exacerbated at this point. Any advice or opinions would be greatly appreciated.
 

affected

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Sorry you have to wait so long Ed.
In the meantime, doing all you can for your physical and mental health is the best thing.
We really can't comment on anything much until you have a neuro exam as we can't see you and are not doctors.
Let us know how it goes, and take care over the next few weeks. (most of us had to wait a month or months for appointments, so we get it)
 

KimT

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Being an athlete, I'm sure you remember to stretch and do warm ups and cool downs. I was a runner, too. My onset was entirely different so don't assume anything until you've been thoroughly examined. Try to enjoy the Summer. I meditate for anxiety.

I hate waiting for anything. Back when I was diagnosed, Mayo Clinic took me in quickly. The waits are much longer now.

Best wishes and let us know how your appointment goes.
 

Endurance Ed

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Hi all!

I am patiently(as best I can) awaiting my first Neurologist visit on Sept 13th & have a few questions, if that’s ok. Almost two months ago, my primary was concerned enough to arrange my appt after noticing my pincer weakness & arm weakness in my right(dominant) arm, along with general fatigue throughout my body. Since then, I’ve noticed rigidity and weakness in both arms, along with pain from wrist to elbow during & after yard work & other laborious tasks. Has anyone experienced this in their progression? All the while, I’ve been trying to maintain my normal routines, including riding 100-150 miles a week & working out a few days a week.

Another concern, is what seems like a lack of spacial recognition. Has that been anyones experience early on? Walking through a doorway, I’ll slam my elbow against a door jamb or reaching for the fridge door, I’ll think I’m instinctively grabbing the handle, but I’m missing by a little bit. Just little things like that have added to my worries.

Thank you all for your patient & knowledge, it’s greatly appreciated!
 

ShiftKicker

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Hi Ed,

I've moved your post to your existing thread. It helps keep everything together in one place some people providing feedback can see what has been discussed and recommended already. Folk will weigh in on your current questions shortly, I am sure.

~F
 

lgelb

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Post-exertional pain all along a limb and "general fatigue" don't typically describe ALS onset, Ed. Spatial recognition often seems to fall by the wayside when one is revved up or anxious, so I wouldn't worry too much about that. We rush when we are stressed. But if you are dizzy as one of your new symptoms (of course, in summer, dehydration and electrolytes are always considerations), that argues against ALS.
 

Endurance Ed

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This morning I spent 4 hours doing a side job, laboriously weeding an overgrown yard. Wasn’t anything I couldn’t handle(despite the exertion, heat and achey arms but I completed the task. Since then, I’ve spent a lot of time sitting and when I get up, I can barely stand straight, due to stiffness & lower back pain. I’m 56 years old(until Thursday🎂) and I’m extremely active and have had some occasional back issues in the past. Is this anything anyone has ever experienced? Between Friday-Sunday I rode 190 miles on my bike & had no problems with my back afterwards. Still dealing with nonstop rigidity and pain in my forearms & general fatigue overall. My 1st neuro appt on Sept 13th can’t get here fast enough. As always, I appreciate everyone’s thoughts & suggestions!
 

affected

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Please do report back after your appointment Ed. As we have said, post-exertional pain and stiffness is not typical of ALS.
 

Endurance Ed

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I finally had my 1st visit to the neurologist. After a full course of physical testing, the doctor noticed completely normal functions throughout my limbs, except for clinical weakness in my right index finger. It was a little unsettling when I could tell it was weak when he tested it. He tried reassure me after the exam, that he had a high degree of confidence that I did not have ALS. He did schedule me for an EMG of my right leg & arm but the test is not until November. Of course my anxiety will continue until then, but I have to stay positive in the mean time. I still have a high level of concern but I need to go in about my life. I thank all of those here who do invaluable service through their great advice & help, it’s greatly appreciated!
 

ShiftKicker

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Ed, if you could please repost the image with all identifying information obscured.
 

Endurance Ed

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Here is the summary of my exam.
 

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lgelb

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Many people have a dodgy finger from keyboarding, gripping handlebars, playing an instrument, using a game controller, etc. The exam is very reassuring and you should indeed live your life. If, as I suspect, the EMG shows only a localized problem, with PT and changing some habits, there is often great success in addressing the issue.
 

affected

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Honestly, while ALS starts distally, it just doesn't start this way and your doctor has really tried hard to get that across to you.
Congratulations on this great result!
 
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