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malibu

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Learn about ALS
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Ma
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Boston
Hi all....First of all, I would like to thank all of you who take the time to respond to the many people like myself and provide information. Having lurked on this site for quite sometime, I thought I would post some things that I have been noticing and get some of your feedback.


I am 45 and a male. About 2 years ago, I noticed pain in my left heel while doing yoga. Almost like the nerve was getting ripped. Several months passed and then the pain was gone. the lower outer portion of my left heel became permanently numb. Had some X-rays done and was chalked up as surreal nerve entrapment.


Simultaneously, i started losing some strength in the leg, and noticed some variation in the feeling of the left foot when I walked. For example, on doing calf raises, I could do 10 easily on the right leg, but on the left, i really struggled. The feeling in my gait was never something like scraping my toe or tripping, etc. But I noticed things like my left flip flop would feel a little looser.


Anyways, some time goes by and things seems to get better with my left foot.


I've had 2 neuro exams and visits sometime in 2017. Observational exam was fine and no issues there. Had an NCV done on the left leg and no issues. I was too freaked out to do an EMG, because I thought the pain would be way to much. Neuro prescribes 300 mg Gabapentin and off I go.


Then, starting in the fall of 2017, I start to notice the same feelings in the right leg. Not as bad of the feeling of ripping nerves, but same location in outer heel. This area also goes numb eventually. Subsequently, I start noticing pain/weakness/intolerance in walking long distances. My right leg gets tired more easily, the anterior tibias muscle gets sore and I become annoyed and paranoid.


I should also note that I have always had incredible balance. Presently in my left leg, I can balance on one leg for over a minute. on the right, where the current issue is, I can balance for also one minute, but it takes a moment to fixate the balance and the foot works hard to maintain the balance. Also, about 30 seconds into the one leg stand, I notice the calf, hamstrings, and flutes start to get sore as possibly a way of overcompensating for foot/ankle weakness.


I noticed fascinations starting last October in both calves after exercise. I have upped my Gabapentin dose, and it seems to help the twitches. The twitches are only in the lower legs, and now it it only the right leg with the fasciculations.


I ski all winter, and this winter, even though i was experiencing issues with the right foot, I had no problems skiing hard every weekend. However, I was just over on business in Asia, and when walking the long distances in the airports, I just became exhausted and muscles were tired. There is some, but very very slight muscle loss in right leg, but nothing that you would notice unless I pointed it out to you. I have another Nuero meeting tomorrow and this time would like a EMG done on both legs. Curious to see what he says.


I think it is important to note that I am an alcoholic....probably 10-12 drinks 4+ days a week and have been one for some time. I've been trying to quit for some time, and if you've been there, you know how hard it is. Part of me wants to believe this is alcoholic neuropathy, but it's not the complete lineup of symptoms that alcoholic neuropathy has. The other part, when I play Dr. Google has me always coming back here and comparing every symptom I have and thinking ALS.


Obviously I'm concerned and would like your advice and kind insight.
 
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Should add that had a lower lumbar mri and it was normal. Just had a physical (need to do a metabolic component to it still) and that was all normal
 
First off, you must tell the doctor tomorrow about the volume of alcohol you drink if you haven't already. They are not there to judge you, but it could provide a GIANT clue about where to search for causes of your symptoms. It could spare you a huge amount of stress, medical fees and wasted time if the doctor has this very important piece of the puzzle. If you don't tell the doctor, they may guess eventually based on blood tests, etc, but that kind of drinking warrants some serious scrutiny when looking at odd symptoms.

I am sure you may have already realized this, but your 40's is when all your youthful chickens start coming home to roost and your body starts really showing the wear and tear of any hard use in your twenties and thirties. I swear, the day I turned 40 was the day my bones started hurting. Not to make light of your obviously concerning health issues- just to make sure you understand that you may have been able to carry on with a particular pattern for a couple of decades, but your 40's seems to be the time where your body starts breaking down even with normal activity. With the added burden of serious alcohol addiction, it can be a bit faster, more profound and in unexpected ways. It sounds like you are working had to keep fit, but the liquor adds a facet that can't be managed with exercise on its own. I am not lecturing on the evils of alcohol or judging in any way, just stating facts that many of us in our 40's discovered the hard way.

Please read the the "READ BEFORE POSTING" thread pinned at the top of the DIHALS subforum. You will find it covers the sensory issues- which are not considered a symptom of ALS.


Edited to note: I am not dismissing everything as a result of alcohol, but it's a gargantuan red flag for any health issues. If you have something going on, the doctor does need to be able to pull out the stuff that can be attributed to heavy long term alcohol use. They may miss something else serious if it's obscured by any symptoms caused by the drinking.
 
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I just want to add one thing from a prior runner's perspective. Flip flops are the worst thing you can do to your feet, other than those pointed toe high heels. If you have a foot problem, you need to wear high quality running sneakers that have adequate room in the toe box. You should be fit by someone with gait knowledge. Without seeing you, I can't tell if you have flat feet, a high arch, or something in between. When you work, you should also wear very comfortable shoes with adequate padding.

Please be very honest with your neuro. It's the only way you will get help.
 
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