Old 09-29-2018, 07:39 PM #1
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Default Scared and looking for answers...

Hello,
I'd like to share my symptoms and hear from this great community. I worked a very tough job, doing 13 hour shifts on my feet lifting and moving heavy weight. I wore asics tgat were originally awesome, but wore them down to nothing. I tend to push my own issues aside and focus on my job, but my coworkers noticed I was limping. I assumed it was my bad shoes. I had horrible back and feet pain at the end of the day. A friend of mine told me about some squishy shoes she has, so I tried them.

I went to a shoe store where they measure my feet pressure points. My balls of my feet had a lot of pressure so he recommended shoes that dropped my heels a little lower to give the ball of my foot relief. They felt good, but I felt unsteady, like I could easily be pushed backwards. Anyway, my feet pain got better. But I noticed at night I would get leg cramps, my calf and the muscle that runs down my shin. My feet would cramp too. Then I started to notice my calves weren't as strong and eventually couldn't stand on my toes. Naturally I was worried and started looking it up.

I can sit with my legs 90 degrees and lift up on my toes up with some weight resistance on my knees. But standing, I can't. I've had an xray on my spine which showed degenerative disc on my lumbar, but mild. I'm waiting to see a neurologist for consult, then will have to wait for an EMG. I'm a huge worrier and keep my stress internal and I'm panicked the signs are pointing to ALS in my mind. Now, interesting enough, the muscle on my shins are almost hypertrophic and my calves are nothing.

I've tried to look up if shoes can cause issues by walking weird. I haven't had much luck and maybe I'm reaching. I'd appreciate any input. Thanks for taking the time to read my post.

Last edited by ShiftKicker : 09-29-2018 at 08:06 PM Reason: paragraphs
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Old 09-29-2018, 08:09 PM #2
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Default Re: Scared and looking for answers...

I recommend you go see a physio. It is their specialty- to assess posture, activity, gait and muscle strength/imbalance and provide feedback on how to correct issues like this. A single session would likely provide you with a huge amount of information about your body and how to mitigate strain. They would also be able to tell you if this is a structural issue or if there is cause for concern.
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Old 09-30-2018, 01:10 AM #3
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Default Re: Scared and looking for answers...

Sounds like you need some help with your feet/gait. The negative heel shoes can unmask pre-existing leg/foot issues because they call on muscles in different ways to keep you upright. Second the motion for a PT consult, and maybe a podiatrist as well. Nothing you have said sounds like ALS.



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Old 09-30-2018, 08:41 AM #4
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Default Re: Scared and looking for answers...

A podiatrist was who I thought I'd be referred to as well by my pcp, but since my calves are atrophied she wanted the emg. She said she is stumped, but I know some doctors won't give what they are considering until they are sure. It's reassuring to hear from ya'll. Thank you.
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Old 10-09-2018, 07:04 PM #5
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Default Re: Scared and looking for answers...

Just an update for the curious, saw the neuro today. So, he seems to think neuropathy, b12 deficiency, and wants to just check for adrenoleukodystropy. He didn't think my odd shoe situation was pertinent. He doesnt think its muscular and I will have to wait a month for my emg. I have hyper reflexes in knees, 2+ and absent in achilles. Also high arches and decreased muscle in my feet. So, I still don't have answers. He says he doesnt think its als but we wont know anything for sure. Also, in speaking with my dad apparently my great aunt and uncle had als! I'm not sure what to make of all of this information except I don't feel much relief. He ordered 14 blood tests! Including b1, by, b12, lactate, fatty acids, ck, crp...ugh, my stomach is rolling with anxiety.
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Old 10-09-2018, 07:38 PM #6
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Default Re: Scared and looking for answers...

Was CMT discussed? https://www.ninds.nih.gov/Disorders/...ase-Fact-Sheet

How solid is that ALS information? Do you know their ages and length of illness? How long ago was this?

Assuming the diagnoses were accurate were these your dad’s relatives? For anything to pass to you even if there is a genetic defect both your parent and their parent who was the sibling of the ffected people would have had to have the genetic defect
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Old 10-09-2018, 09:04 PM #7
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Default Re: Scared and looking for answers...

CMT was not, but I've had that in the back of my head considering the high arches and per the doctor, my guess are starting to hammer, but I'm not so sure. I heard to hop off the call with my dad before I asked more about it. He said my great aunt, his mom's sister and I'm not sure which great uncle. Will def ask more detail. I don't remember meeting them, so I assume a while ago. Thank you for the reply.
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Old 10-17-2018, 08:40 AM #8
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Default Re: Scared and looking for answers...

Another update for those curious...
I had a slew of blood tests including: Vit b12, b6, b1, immunoglobulins, LDL, folic acid, aldolase, CK, sed rate, CRP, fatty acids, and Vit D.
All were normal except aldolase was just slightly low. I have an EMG next Wednesday and will update with those results.
I can't find much on low aldolase (mine is 3.1 with normal reference 3.3-10.3), just mostly on high aldolase. What I did find was general muscle wasting disease, fructose intolerance and late stage muscular dystrophy.
I'm still confused and lost.
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