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terrybks

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New to the forum, although I have searched the threads for a few weeks. Would like any and everyone's thoughts. I am 48, male, and lifted weights regularly since I was 18. My first neurological symptoms were nine years ago - sudden onset of twitches in legs, numbness on left side of face and down left arm, "hollow" feelings in hands and legs (very strange), other paresthesias. Was seen at the regional ALS clinic which did an EMG and spinal tap, which were both normal. Also had an MRI of my brain which was normal. ALS clinic thought I had BFS. After one year I returned to lifting (did not workout while this was going on) and worked out until July 8, about two months ago. Put on 30 pounds of muscle, got strong, felt fantastic for eight years.

After several months of intense workouts, I had another sudden return of problems on July 8 which continue. Things began with several seconds of a strong tingling in my head. Sounds weird, but that is what happened. After that, I had the hollow feeling in hands again which has become progressive bilateral hand atrophy and weakness, twitches all over, fatigue, brain fog, a few spells of vertigo, legs that get tired after walking for about 30 minutes, tingling in various areas (strong sensation in upper arms at times) including inside mouth, pins and needles in feet. No footdrop. Hands are slowly wasting away. I have had blood work done by GP which was normal for all that was tested. CK level fine, lyme negative, thyroid normal, no RA, etc. Was seen by a local neuro and passed the clinical exam ( my grip is OK) and the EMG he did on my arms and legs came back normal - no fascics, no fibs, no psw, etc. Babinski was normal on right foot, but I pulled away on left foot. He didn't know what to say about my hands. Given the EMG and clinical exam result he told me I did not have ALS. Given my symptoms I couldn't believe the EMG was completely normal. So, I am going to the regional ALS clinic (KU) that I went to originally nine years ago. Need a second opinion. Waiting for the appointment day and time. Any thoughts on my experiences and symptoms would be appreciated. And God bless all of you.
 

ottawa girl

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Personally, I'd be happy it's not ALS! ( But thats just me).

Sounds like you've received good care. If you want a second opinion... Get one. You can investigate symptoms further, but you might want to wait and see for awhile. Maybe, if symptoms persist for four to six months and/or they suddenly escalate, you can get another consult.
 

terrybks

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Thanks for the reply. I am going to get a second opinion. My neuro's office here has OK'd my referral for that and I am just waiting to hear from them on when the KU visit will be. I just wanted to hear from forum members their thoughts on my symptoms and my history, given that I had issues that resolved by themselves nine years ago and have now returned and are progressively getting worse. In two months I've gone from squatting over 300 pounds and bench pressing my bodyweight 10 times to only being able to walk about 30 minutes and then needing to rest because my thighs are stiff. While I read that MND does not cause sensory symptoms, which I have, I do have other symptoms of MND. I am having a very hard time reconciling a normal EMG with what I am physically experiencing. Just would like some opinions. Very scared and frustrated.
 

bluedog

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I have a similar history to you. Neuro says I don't have ALS.

Started lifting weights at 14. Around 2001, at age 43, had same symptoms as you, and testing was all normal, except for brisk knee reflexes.

Symptoms resolved to a great extent within a few years, and I started lifting heavy again. Had a good 8 - 10 years of being worry free.

In late 2012, started having problems swallowing solids. In January 2013, had strong tingle in head, accompanyied by a bursting and trickling-down sensation in head. Felt like brain cells burst. Limb symptoms started at that point, along with twitching and other symptoms.

EMGs in Feb and March of 2013 totally normal. Subsequent EMGs in July and later showed chronic denervation.

The fact that your EMG was normal means nothing. Mine was normal intially too. EMGs can miss active denervation. Mine did. But I had to have active at some point between Jan and July because I had chronic, with no chronic previous to that.

Hopefully, the KU neuro will also say no ALS. But I think you still need to have another EMG six months from the start of your symptoms to verify that no chronic denervation appears (large MUPs). Then you can be more certain it is not ALS.

Weightlifting and vigorous exercise causes ALS in some people. There is no denying that. Almost every person on this forum with the sporadic form of ALS has a history of weightlifting and/or running. Usually, any high profile person you see in the news with ALS was an athelete.

The lifetime chances of someone getting ALS are 1 in 500. For people with our history, my guess is it is less than 1 in 10.
 

terrybks

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Bluedog, thanks a ton for the reply. What is your condition now?
 

bluedog

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My legs and arms feel weak, my swallowing is still bad, and I have atrophy of left triceps and right face. My twitching has lessened somewhat recently.

Because the neuro said i don't have ALS, I continue to lift weights, which is the last thing I want to do, in order to see if i can gain strength. I am able to go up in weight on the bench press (can do 90lb dumbells 10 times now) and other upper body exercises (curl 110lbs 10 times). I don't work my lower body because I just end up tearing my hamstrings. I ran a mile a few days ago and am going to try to see if I can gradually run farther. I also play basketball a few times a week. I know this self testing doesn't mean much, but it gets me through the day sometimes.

My anxiety level is off the charts, and it is still difficult to get through each second of the day.

I didn't have the triceps wasting when I had the clean EMG. I think that because you had hand wasting, and the neuro EMG's your arms, and the EMG was normal, you could be OK as far as ALS is concerned. But I would still get another EMG at the 6 month mark to be even more sure. Best of luck. I know how horrifying all this is.
 

seaside

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blue dog – let me get this straight. You believe that weightlifting can cause ALS. You've been told you don't have ALS. You will continue to lift weights to gain strength. Do you possess some secret knowledge of when to stop lifting to avoid ALS or are you just willing to risk it?
 

ottawa girl

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Terry,

Please keep in mind, Dr bluedog had, at last count, 5 EMG tests. As I recall, he was told at least five or six times he has no ALS. He himself has stated he does not really believe the doctors. ( he also mumbled something about leaving the forum but I digress). Now he's exercising, running, playing hoops, weight lifting.... But he still pops in on a forum dedicated to ALS. Dedicated to people who are living with this fatal nasty illness. People who can't take care of their own personal hygiene let alone don running shoes. Doesn't that strike you as a little tiny bit odd?

Terry, I tell you this tale of woe in the hope that you will do everything in your power not to follow in his footsteps. Just I have to figure out how to live my best abbreviated life with this crap, you need to figure out how to lessen your fear of having ALS and moving on. These issues are as "horrifying" as you allow them to be. You didn't have ALS nine years ago, and I'm betting you don't have it now. Let it go for just a few months - then, if you still opt to get back to the ALS clinic, sadly I have it on good authority it will still be there. Please have the good sense to heed advice from someone who is not riddled with anxiety ( though I ought to be) rather than the opposite.
 

terrybks

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Thanks for the replies, especially you Elaine, and God bless you. I did not know bluedog's history and was shocked to read his reply that he was lifting, running, etc. I can't do those things right now. Tried some very light leg work a week ago and my thighs did not like it all. My hands continue to atrophy and I am sensing some arm and shoulder weakness in my right arm. Also having an almost numb sensation in that upper arm, too. Twitching all over today. I want to believe the EMG my local neuro did (he has several years experience, skilled, etc.) and with symptoms I would think something would have shown on that test instead of no fascics, no fibrillations, no psw, etc. If my body wasn't telling me one thing and the test another, I would absolutely move on, but believe me that is not the case. Not trying to be difficult, just not convinced I don't have something going on. I need the second opinion.
 

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I knew Dr. Bluedog would show up when someone mentions weightlifting!

To all you ALS wonderers::Weight lifting does NOT cause ALS despite what Bluedog says!

Weightlifting and vigorous exercise causes ALS in some people. There is no denying that. Almost every person on this forum with the sporadic form of ALS has a history of weightlifting and/or running. Usually, any high profile person you see in the news with ALS was an athelete.

This is a sad case of not understanding cause and effect . Bluedog spreads misinformation.

What is the percentage of the American population with ALS? What is the percentage of the American population who exercises and lifts weights? I wish that I was a statistician so I could explain why these two statistics do not have any bearing on each other. I eat sushi, people who have cancer eat sushi--does that mean I have cancer or that sushi causes cancer?

And, u idiot--a school teacher in Michigan, and business owner in FL, a retail manager in Kansas, they are not "high profile People in the new" therefore you do not hear about them--you only hear about the celebrities-- most of which are sports figures in this counrty.

Bluedog, You degrade this forum, and you spread false information, and you are either a disgusting troll or a mentally disturbed crank.

Terry, you do not need a second opinion on ALS. what ever is going on, it is not ALS.
 

bluedog

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Here's the story folks. This is the DIHALS section, not a section dedicated to those living with late-stage disease. But it is good to see the bluedog haters out in full force again... it has been a while. Not to knock OttawaGirl, who seems pretty cool.

Some people in the early stages can still lift, run, etc. That's not an insult to those who can't. In fact, in '05, Jon Blais completed an ironman triathalon after being told he had ALS. He swam 2.2 miles, biked 110 miles, and then ran 26.4 miles or whatever the ironman distance is. A guy on this forum with ALS (Kevinski) lifted weights and gained strength and mass. And I just read an article about a guy with ALS who runs 10Ks competitively.

Terrry, the only thing that matters is the EMG results, not what the neuro says or the people on this forum say. My EMG is as dirty as it can get without the dr. throwing in the ALS towel. At this point, your EMG is normal (did you get a copy to see if it was actually totally normal?). And even though that means nothing this early on, it was not abnormal, and that is always a good thing. And the fact that it was normal with wasting present makes things even more promising for you. If you have a clean EMG six months out, chances are you are in the clear, though that isn't a guarantee either.

Seaside, I said that lifting weights was the last thing that I wanted to do. My hunch is that it is not safe to lift weights at all. (If anyone at home is watching, don't let you kids lift weights, or take up running, soccer, football, etc.)

Terry, don't worry about the skill of the technician. I've had 7 EMGs, two in '02 and 5 recently. Given 15 minutes, I could train a monkey to do them. You stick the needle in, ask the patient to offer resistance, and then look for abnormal MUPs. Then you tell the patient to relax the muscle and listen for fibs, psw, and fasics. That's it. If your tech didn't see or hear anything, there wasn't anything to see or hear.

Terry, my body is telling me one thing, and the EMG is telling me the same thing. It just isn't speaking loudly enough yet to tell the neuro the same thing. Relish the fact that your body is telling you one thing and the EMG another, and hope it stays that way and that you start to see improvement.
 

ottawa girl

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Not to knock OttawaGirl, who seems pretty cool

Terry, don't worry about the skill of the technician. I've had 7 EMGs, two in '02 and 5 recently. Given 15 minutes, I could train a monkey to do them.
 

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terrybks

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I will try to move forward. i just have something going on despite the EMG. i did get the results and the EMG simply said normal across the board for all muscles in both limbs. But i still have the symptoms i have written. i will ask this and i will stop . is an EMG that is one needle stick per muscle good enough?
 
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