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Old 02-16-2017, 11:11 PM   #1
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Well.....I had to go for a complete physical exam today in order to get a new RX for borderline hypertension. This was diagnosed about three years ago through an employer health fair (that's what they call it). Anyways......this ended up being a full physical (got my money's worth). Mind you that I don't like going to see doctors for anything. I never have. Figure I've had three trips to the ER and two visits to a clinic since I got out of the USMC in 1986.
My first interaction with a physician in a long....long time....today.
Turns out I am still in perfect health no matter how many times I've tried to destroy that in the past. Still 20/20 vision, lungs good (although I do smoke). Doc says a little bit of fluid behind the ear drums. My brain is okay (just by their tests). Then......the doc did the reflex ordeal with that little rubber hammer thing. My knees and my ankles. He says....."that's odd". So I'm asking....."what?"
I have no reflexes in the lower extremities. So I ask.........WTF doc? He says there might be some issues. I tell him to spell it out for me instead of keeping secrets. He says it could be indication of ALS. I had no idea until I got home this afternoon as to what that might be. Doc says "we can fix that". I'm not even sure I want to fix anything with me.......and now that I've looked it up.....I aint so sure it can be fixed at all. For those that don't know (like me), ALS is also known as Lou Gehrig's disease.
This kinda shit is not going to get me down. I'm scheduled for a follow up exam and blood work four weeks from now. I'm not sure I want to know more, but they've got me by the short hairs for getting a refill for my RX.
Anyone been diagnosed with ALS? Relatives? What sort of degradation of life would I be in for?
What I gathered from my doc today wasn't a whole lot. Apparently the medical community is baffled with this as well.
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Old 02-16-2017, 11:57 PM   #2
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Don't get too excited just yet. Four week to lab work and such is not a long time, but should have been scheduled sooner for you peace of mind. One of the things that drives me nuts about Drs now days is the crap they tell people. Be happy you didn't get this info when someone called you to schedule testing and follow up.
Yours would be a worst case or near worst case diagnosis. It could happen but there are more than enough reasons you have absent reflexes, up to they are absolutely normal for you. Seems the Dr is new to you.
If it happens to be the worst, then hopefully they can stop progression now days. He said they could fix it, hold him to it.

Best wishes
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Old 02-17-2017, 12:22 AM   #3
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I'm concerned......not excited.
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there are more than enough reasons you have absent reflexes
Kinda figured that as well.....but I've never been in a terrible accident nor ever had a spine injury.
Yeah...about what the doctors tell people these days right? I've always figured it a racquet of sorts to sell more meds or to throw a half million dollars into the system for "tests". Kinda why I haven't trusted any of them in the past....and wished I didn't have to deal with them these days. I've realized that I just can't stay away from them forever. That's the way the system was designed I reckon.
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Old 02-17-2017, 11:18 AM   #4
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I'm concerned......not excited.

Kinda figured that as well.....but I've never been in a terrible accident nor ever had a spine injury.
Yeah...about what the doctors tell people these days right? I've always figured it a racquet of sorts to sell more meds or to throw a half million dollars into the system for "tests". Kinda why I haven't trusted any of them in the past....and wished I didn't have to deal with them these days. I've realized that I just can't stay away from them forever. That's the way the system was designed I reckon.
No one is forcing you to see a PHY, if you don't want to see a Phy then don't. But don't go to one then bitch about it. If you don't trust them then treat yourself. The system was designed to help people in a capitalistic society, not a "racket". There are plenty of free clinics around that will treat you for free. If you like the socialistic medical systems better then you could move to Canada!
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Old 02-17-2017, 11:25 AM   #5
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I'm reluctant to comment because ALS is some terrible shit. I'll just let you know I'm gonna pray for God's will and hope for the best for you...
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Old 02-17-2017, 12:28 PM   #6
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Keep your head up brother. I went to a doc when I was 33 because I thought I had injured my hip. As time went on, it became apparent that there was more to it than that. Lots of tests, and such revealed that I have Rheumatoid Arthritis.

About a year after that, I suffered a heart attack and had to have stents placed. My Rheumatoid Arthritis has gotten worse and worse, and some of the most effective medications available have stopped working for me over time.

So, here I sit in my mid-late 30's, damned near crippled a good majority of the time, with a house full of kids and a disease that will never go away. It is both physically and mentally taxing and there are often times that I feel like a complete waste of space. In the end though, I try to remain as positive as I can and realize that my family needs me here whether I am in a diminished capacity or not.

Don't sweat the diagnosis until you actually have a diagnosis. Even then, assuming worst case scenario... Make your mind up to be a fighter and then fight until your body won't allow you to fight anymore. While I agree that the medical field seems designed for only the purpose of milking us dry... Good medical care goes a long way toward maintaining a tolerable quality of life while battling serious health conditions.

Stay positive, and best wishes to you buddy.
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Old 02-17-2017, 12:34 PM   #7
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Last month my neighbor had a false diagnosis of ALS. Hopefully yours is the same.
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Old 02-18-2017, 08:03 AM   #8
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Get a second opinion from another different doctor
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Old 02-18-2017, 09:23 AM   #9
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Yes, do seek other doctors and get a firm grip on what is going on with your body. Rbox1064 said it right, ALS is some terrible shit, I watched as it took my brother in law, very sad. Any doctor that says "we can fix that" about ALS is a bit too optimistic and might need to go back to med school. Good luck to you, there are a lot of less serious things that might be going on. It took the doctors about six months to fully diagnose my brother in law with ALS.
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Old 02-18-2017, 12:19 PM   #10
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Keep your head up brother. I went to a doc when I was 33 because I thought I had injured my hip. As time went on, it became apparent that there was more to it than that. Lots of tests, and such revealed that I have Rheumatoid Arthritis.

About a year after that, I suffered a heart attack and had to have stents placed. My Rheumatoid Arthritis has gotten worse and worse, and some of the most effective medications available have stopped working for me over time.

So, here I sit in my mid-late 30's, damned near crippled a good majority of the time, with a house full of kids and a disease that will never go away. It is both physically and mentally taxing and there are often times that I feel like a complete waste of space. In the end though, I try to remain as positive as I can and realize that my family needs me here whether I am in a diminished capacity or not.

Don't sweat the diagnosis until you actually have a diagnosis. Even then, assuming worst case scenario... Make your mind up to be a fighter and then fight until your body won't allow you to fight anymore. While I agree that the medical field seems designed for only the purpose of milking us dry... Good medical care goes a long way toward maintaining a tolerable quality of life while battling serious health conditions.

Stay positive, and best wishes to you buddy.
Stay strong Brother. Your kids are lucky to have their Dad in the house with them, even if he feels like shit 95% of the time. Being there for them will have a lasting impact you may not even be fully aware of for years to come. That's my own hope anyway (sidelined a good 95% of the time w chronic pain and spinal injuries).
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Old 02-18-2017, 12:27 PM   #11
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Ram, to echo what someone said above, I would seriously try and put this out I'd my head until you get some kind of definitive test result. Neurological tests like this reflex test can be squirrely as heck.

False positives, false negatives, and shifting findings for the same person on different days or even different docs w slightly different test physical test methods. I think you said you don't take any meds, but if this reflex thing is real that is the first place I would look.

Many people who take daily meds gloss over it, but if meds are strong enough to induce a positive effect, then they can and will have side effects. Also because every body is so different things like reflexes can vary widely even in a 100% healthy person. Could be that the doc just hasn't seen this end of the range that much.

So I would definitely sit tight as hard as that is gonna be. That's one downside of the internet. It is VERY easy, almost inevitable, to get sucked into worst case scenarios looking a health related info online.

Good luck man, my bet is they don't find ALS, are mystified, and you go on about your life.
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Old 02-18-2017, 12:28 PM   #12
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I pray the doc is wrong.
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Old 02-18-2017, 12:32 PM   #13
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Stay strong Brother. Your kids are lucky to have their Dad in the house with them, even if he feels like shit 95% of the time. Being there for them will have a lasting impact you may not even be fully aware of for years to come. That's my own hope anyway (sidelined a good 95% of the time w chronic pain and spinal injuries).
Thanks for the encouraging words. Right now is a rough time as I had been doing pretty good for a while, but have recently began to have extreme allergic reactions to my medications which has left me dealing with the joint problems to an extreme degree. As a result, I am likely to soon find myself unable to work, and needing to figure out how I'm going to support my family with no experience/training/education outside of the field where I've spent my entire adult life.

OP... Hang in there man. I agree about seeking multiple medical opinions. My blood work went from a local specialist, to a regional specialist, to the Mayo Clinic before certain possible ailments were ruled out and a specific diagnosis was made. There's a good chance that your issue is a non-issue, or related to something far more mundane than what has initially been suggested.
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Old 02-18-2017, 12:33 PM   #14
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Knew one guy that had it and a few that had been falsely diagnosed with it. One had had a back injury that affected the nerves going to his legs. I can't remember what the other false ones turned out to be. Prayers for you that it's a false diagnoses.
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Old 02-18-2017, 01:55 PM   #15
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Do you have good insurance and a make a comfortable amount of income?

That may be what they have their eyes on. Many healthcare providers do these days. Just looking for excuses to prescribe "more testing" for accounts receivable.

Strange for a doctor to make that kind of a comment right out of the gate on such slim indication, and no tests.

As stated before ALS is a serious and terrible disease, nothing to be taken lightly by you or the doctor.

Get a second opinion, even at this early stage, just to see if the original doctor seems to be on the right track as he proceeds, if nothing else.

My prayers are with you, and I hope this turns out to be a non issue.
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Old 02-18-2017, 02:12 PM   #16
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Doc sounds like an idiot. NO good doc would say such a thing & load that worry on someone without more thorough testing, that is WRECKLESS. Not to mention saying "we can fix that". I wouldn't sweat it but find a competent doc for a 2nd opinion.
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Old 02-18-2017, 02:45 PM   #17
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AK104 -- been there man, been there. Ok you've prob thought through this, but first you need to try and get a copy of your disability ins. policy at your employer if you have that coverage. Once you have it find a lawyer that handles disability claims. I'm not sure if you are eligible for Soc Sec Dis., but if you are make sure the lawyer does that too, most disability lawyers do.

If you can get access to it you'll want to bring your work policy w you. Or at least that part of your Employer's Employee Handbook (could be tucked into a "Policy and Procedures Manual"). At the very least, if you do have work coverage, try and figure out who the insurer is. Many of the policies they write will have similarities in how they handle claims.

Receiving any benefits can take quite a while, so you should begin thinking through any reasonable downsizing (sucks, believe me I know) asset sales (guns?), and sources of funds like a home equity line of credit or a second mortgage. You can pay them down once the cash flow is re-established.

Having to deal w this shit fucking sucks. There is not much real upside, at least at first. I was on the cusp of finally reaping big financial rewards for a LIFETIME of boy scout keeping my nose clean (relatively) and ass to the grindstone when I was blindsided. Not much warning.

So continue to hope for the best, but prepare for the worst. RA is a bitch. I have a lot of joint issues and have been tested for it a few times and read up on it. At least it is common enough that the Pharma industry is investing pretty heavily in new treatments.

Oh yeah, final bit of unsolicited advice LOL. Even at its best, this kind of stuff involves a massive transition and changes to your family's life. There is no easy way to deal w that, but if possible being as proactive as possible w your Family (and friends) NOW, likely will pay big dividends down the road in not having to deal w stuff ad hoc, like in-law holidays, travel, kids events, the whole nine yards.

I've been going through this for about 7-8 years now and my wife still hasn't fully accepted it. She generally is a Saint, but there are days when she just doesn't get it. It is what it is. No-one ever said life would be easy.

Good luck in carving out a solid initial action plan so you can get a better idea of what to expect finances wise in the long term.
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Old 02-19-2017, 12:46 AM   #18
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Doc sounds like an idiot. NO good doc would say such a thing & load that worry on someone without more thorough testing, that is WRECKLESS. Not to mention saying "we can fix that". I wouldn't sweat it but find a competent doc for a 2nd opinion.
After the doc said "that's odd" after hammering on my knees and ankles then starts hammering the keyboard on his little laptop.........I asked! I asked what he was so weird about. Since it seemed he didn't want to spill the beans immediately..........I reminded him that he's dealing with a former US marine and if he wanted to leave the room alive.......................he'd best spew forth something. So he did.

I really appreciate all of the kind words, prayers, advice, thoughts, feedback, suggestions, input, and PMs from the community here.
The information I got was unexpected of course.......but it's nothing terminal. I know a lot of folks here are dealing with way worse.....and I don't even have a definitive diagnosis yet.
It's just I got good news and stupid news the same day. After the doctor's office I went to take my piss test since the USPS hired me (the good news). I'm just not used to those kinda swings in one day let alone a week's time. LOL!
I'm still the same person. Each time I get into a vehicle and drive might be my last day. Nothing new really. It's all perspective. I'm strong.....and if nothing else....I will continue as always with the exact same outlook I always have. Hopefully I can still type and if not.........I'll get one of those Stephen Hawking interface devices. That way.......I'll be here with words of support, prayers, or wisdom and comfort whenever some of you need it.

Now...........back to talking about guns and stuff!
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Old 02-19-2017, 01:31 AM   #19
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Als is a terrible disease

My exs uncle has it and the poor guy can't even open his own beer

It also sometimes passes onto the kids

I hope we find a cure someday
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Old 02-19-2017, 01:59 AM   #20
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Als is a terrible disease

My exs uncle has it and the poor guy can't even open his own beer

It also sometimes passes onto the kids

I hope we find a cure someday
Wish I could tell your ex's uncle? there might be a cure. I have no idea.

If I can't open my own beer then life definitely won't be worth a damn. My wife damned sure won't be doing that for me......and I don't have kids to do that either. (once my sense of humor is gone.....I'm gone). Your ex uncle is now in my prayers as well.

You know.........I asked the doc specifically about heredity and he told me it doesn't work that way. I figure that means that statistics haven't been conclusive enough for medical science to make that correlation. Then again......my doc looks rather young and no telling what he does in his spare time.....other than reading the latest medical journals and surfing the net.

All that aside, I'm learning more about the affliction each and every day. Just from what I'm hearing and not because I'm actively seeking out the information. My deepest sympathies for anyone who currently has it. I honestly don't know at what point I would be able to decide that I'm no longer independent and in need of care. I kind of hate to say this but quite possibly a terminal disease would be more kind and forgiving rather than a progressively debilitating condition.
I hope nobody feels less of me for thinking that. I don't figure there would be a choice in the matter anyway.
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Old 02-19-2017, 02:11 AM   #21
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Wish I could tell your ex's uncle? there might be a cure. I have no idea.

If I can't open my own beer then life definitely won't be worth a damn. My wife damned sure won't be doing that for me......and I don't have kids to do that either. (once my sense of humor is gone.....I'm gone). Your ex uncle is now in my prayers as well.

You know.........I asked the doc specifically about heredity and he told me it doesn't work that way. I figure that means that statistics haven't been conclusive enough for medical science to make that correlation. Then again......my doc looks rather young and no telling what he does in his spare time.....other than reading the latest medical journals and surfing the net.

All that aside, I'm learning more about the affliction each and every day. Just from what I'm hearing and not because I'm actively seeking out the information. My deepest sympathies for anyone who currently has it. I honestly don't know at what point I would be able to decide that I'm no longer independent and in need of care. I kind of hate to say this but quite possibly a terminal disease would be more kind and forgiving rather than a progressively debilitating condition.
I hope nobody feels less of me for thinking that. I don't figure there would be a choice in the matter anyway.
Just keep fighting brother

I'll say some prayers for you and your family

I don't know if it for sure passes on but her family said it's a possibility so who the hell knows

I trust doctors opinions just like I trust the media, it might be true it might not but I don't think any man is the end all be all know it all except god. Just my opinion
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Old 02-19-2017, 02:25 AM   #22
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I trust doctors opinions just like I trust the media, it might be true it might not but I don't think any man is the end all be all know it all except god. Just my opinion
Exactly. I've spent nearly my entire life avoiding these questionable aspects, and trusting in others never came easy for me. I've never been dependent on others either. I would actually avoid the follow up lab work in 30 days....but they have me by the short hairs to renew my RX for BP control. My dad had/has high BP and that is hereditary from what they say. I just think it's a culmination of me being pissed off all the time on how the system works (or doesn't).
Thanks
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Old 02-20-2017, 06:58 PM   #23
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Any doctor that says "we can fix that" with regards to ALS is a complete and utter dumbfuck that cheated his way through med school or got his degree from The University of Papua New Guinea or the equivalent. You should run like hell from that doctor and make sure you let everyone in your family know to stay away from this dumbass.

Having said that, I am praying for you OP. My ex mother in law had ALS. Get a second opinion and
HAVE A NEUROLOGIST DO A NERVE CONDUCTION STUDY!!!

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Old 02-20-2017, 07:35 PM   #24
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I've watched two lose friends die from ALS. Not the death I would choose for myself.
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Old 02-20-2017, 07:53 PM   #25
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I've watched two lose friends die from ALS. Not the death I would choose for myself.
How about choking on those big feet ya got, Mr Ray of Hope?
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Old 02-20-2017, 09:42 PM   #26
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Hope you don't have it. The next door neighbor was diagnosed a few years ago and was wheelchair bound withing the first year. Get a second opinion, or more tests before worrying about it.
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Old 02-21-2017, 11:32 AM   #27
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Had an uncle that passed from this in his 40's, and a couple of other shooting buddies as well. They all were diagnosed because they went to the doctor with problems which were symptoms of ALS that they did not know such as random numbness and limb weakness. In my uncle's case he had fallen a couple of times and his speech became slurred. My aunt made him go to the doctor when he fell off his horse while working cattle, thinking that he had some mini strokes.
He went fast, within a year.
There are lots of other conditions that can cause loss of reflex, if you don't show any other symptoms, I would not sweat it, but still get tested and figure out whats going on.
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Old 02-22-2017, 08:17 PM   #28
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Last month a very dear and long time friend died from ALS.

Don't get too wrapped around the axle just yet.
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Old 02-22-2017, 08:18 PM   #29
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Any doctor that says "we can fix that" with regards to ALS is a complete and utter dumbfuck that cheated his way through med school or got his degree from The University of Papua New Guinea or the equivalent. You should run like hell from that doctor and make sure you let everyone in your family know to stay away from this dumbass.

Having said that, I am praying for you OP. My ex mother in law had ALS. Get a second opinion and
HAVE A NEUROLOGIST DO A NERVE CONDUCTION STUDY!!!

^^^This
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Old 02-22-2017, 09:49 PM   #30
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Neuropathy. Get 3 diagnoses. Diabetes?
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Old 02-23-2017, 12:04 PM   #31
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Just keep this in mind friend. When you look something up on google it will litterally give you the worst of the worst answer for everything. Don't be stubborn and go talk to a few docs. They'll give you answers good or bad based off of you. Good luck
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Old 02-23-2017, 02:24 PM   #32
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Guy at work started complaining he could not swallow, and his neck muscles felt funny. We thought maybe just something temporarily or minor, then he was diagnosed with ALS. He stuck it out at work for a couple of months, but he was going fast, and died within a year.

Terrible disease, I truly hope this is not what you have. But no doctor should tell a patient that unless he is absolutely sure. Could be a whole bunch of things.
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Old 02-23-2017, 02:51 PM   #33
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ALS, I lost a friend very quickly, working out with him one day, about 16 months we lost him. I played hockey with him and he was a great County Sheriff, it was a loss to our community.

https://www.drperlmutter.com/use-ket...-treating-als/

Ketogenic diet help with all sorts of nervous system disorders, from Parkinson's to ALS.

Supposedly my Uncle Ray was diagnosed with ALS in the late 70's he lived well into the 1990s (1995 when I was in the service) he was about 75 if I remember right and was a WW2 Vet (it was a heart attack he died from).

A few other things to think about.... I don't have a good reflex at my knees, but I've torn my body up over the years. Sometimes it takes my doc 5-10 times to get my reflex across my patella. Sciatic nerve damage, general nerve damage can all contribute to this, body weight, muscle development etc. etc.. so stay positive and see an expert, fingers crossed for you and I'm betting you are good.

The big ones I have always heard is swallowing and numbness in one of your extremities (loss of use falling, tripping, dropping things)
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Last edited by bearpaws1973; 02-23-2017 at 02:58 PM.
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Old 02-23-2017, 05:01 PM   #34
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Had a coworker who became a friend, his father was diagnosed and passed in 18 months. Guy just finished building his new house ready for retirement then gets hit with ALS...tragic and not the way you would ever choose to die. He had a prior head injury that was significant, doing construction in a Brooklyn ghetto public housing project and on his walk to the work truck to leave for the day some savage through a beer bottle from the roof of the building he was helping to repair and it struck him in the head. Studies are being done looking for links between head injury and ALS, like what is being seen in some college and pro football players who have been diagnosed with ALS.
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Old 02-23-2017, 05:05 PM   #35
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Quote:
Originally Posted by bearpaws1973 View Post
ALS, I lost a friend very quickly, working out with him one day, about 16 months we lost him. I played hockey with him and he was a great County Sheriff, it was a loss to our community.

https://www.drperlmutter.com/use-ket...-treating-als/

Ketogenic diet help with all sorts of nervous system disorders, from Parkinson's to ALS.

Supposedly my Uncle Ray was diagnosed with ALS in the late 70's he lived well into the 1990s (1995 when I was in the service) he was about 75 if I remember right and was a WW2 Vet (it was a heart attack he died from).

A few other things to think about.... I don't have a good reflex at my knees, but I've torn my body up over the years. Sometimes it takes my doc 5-10 times to get my reflex across my patella. Sciatic nerve damage, general nerve damage can all contribute to this, body weight, muscle development etc. etc.. so stay positive and see an expert, fingers crossed for you and I'm betting you are good.

The big ones I have always heard is swallowing and numbness in one of your extremities (loss of use falling, tripping, dropping things)
Yes, it usually is seen first in the hands, loss of dexterity, numbness, unable to grip or hold objects.
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