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Cowboy50

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Learn about ALS
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All,

I am a 50 year old male. I have read the stickys and appreciate you all being here. I have had twitching, primarily in right buttock, hamstring and right arm, but am having them in other areas as well, just not as frequent. I have not been able to do a standing calf lift on my right leg in 6 years due to back surgery according to my Dr. I had am EMG done 6 years ago and they noted active and chronic denervating neuropathic process affecting the bilateral gastrocnemius, which can be seen with bilateral lower lumbosacral radiculopathies. My right calf muscle has decreased in size and measures 19" vs 21" on the left, I am wondering if this is due to not really being able to use the muscle, although it seems to have gotten smaller more recently. No other noted strength loss other than when I met with the Neuro, I had a hard time stopping her from pushing my right foot outward. I do have foot drop on my left foot but have had that for many years as well. I have had 2 back surgeries, one being a major 360 fusion from T10 to L2.

My upper body seems good, only thing is fascilations in middle right of my back, almost constant, and my right upper trapecis muscle is smaller than my left. No signs of weakness, but twitching and cramping in right arm have me concerned.

My hip was bothering me 3 months ago, I attributed to my bad back and it has since gotten better, no more pain

Neuro exam went well, I am hyperreflexive everywhere and have been for at least 6 years, I have a positive Hoffman's test which I have had for at least 2 years, my Babinski and jerk jaw were negative which the neuro said was a good sign.

I have had pain in my right shin of late and am concerned with the atrophy of my calve muscle and what appears to be atrophy of my shoulder, upper trapezis. The only weakness that I have is inability to do calf raises for 6 years, inability to stop Neuro from pushing right foot outward.

This weakness along with all the twitching, especially right sided has me concerned. The neuro said that she is not convinced I have ALS and ordered a battery of blood tests which are all coming in and I can see the results. She has ordered an EMG for 2 weeks from today.

I am trying to remain calm, but am concerned that I may have onset of ALS. I was hoping to get a clean bill of heath from the Neuromuscular Dr., but then she ordered the EMG.

If anyone can review my information and provide feedback I would greatly appreciate it. I am concerned that this may have started in my leg and is now moving up to my shoulder. Any insight you can provide is appreciated, feel free to ask questions and thank you!
 
Cowboy, we really can't tell you anything other than to wait for the test results. As you know if you've been reading, ALS is a diagnosis of exclusion: they look for other possible reasons for you symptoms then they do the EMG. The best advance I can give you is to take a deep breath and wait. As we have learned, if you have ALS there is nothing that worrying now can do. If you don't, and most don't, you've had a miserable two weeks for nothing.

Hoping for the best for you,
Becky
 
Cowboy, I have to agree with Becky. Hold your breath, a little prayer and try to remain calm while you wait for results. The one thing I see in your reported symptoms is a lack of symmetry. I am not a doctor, just been living with this disease for many years, most of the people I know experience symmetrical symptoms. There may be some small ray of hope there.

Good luck, God bless and be sure to keep us posted.

Tom
 
Thank you Becky, that is what I am doing, playing the waiting game, you advice is much appreciated thank you! One other thing, with a negative Babinski sign, does that point away from onset being in my right leg? and would does als spread to other areas or should have I seen a more pronounced weakness in my right leg before if spread? Just curious the experience of the panel could provide their feedback. Thank You
 
Cowboy, a Babinski either way really isn't worth discussing in and of itself, esp. with your history of spine surgery.

More significant is the atrophy you report in the absence of new weakness; ALS doesn't normally present that way.

Tom, one of the hallmarks of ALS is asymmetric onset, not symmetric as you mention. In other words, symptoms generally start on either the left or right side, when there is limb onset (the most common type).

Cowboy, the odds are very much in your favor. Let us know what the EMG reveals.

Best,
Laurie
 
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As Laurie says the odds are in your favor Cowboy and do let us know. Re symmetry. Everyone in my family has had asymmetric onset though it spread over time to involve both sides. This is also true of every PALS I have met including one who after ten years only has one leg involved.
 
Hubby's symptoms onset was asymmetric, as is the only other person I know with ALS. Hubby also has no Babinski, so I'm not sure if that is all important in an ALS diagnosis.

Keep yourself occupied for the next two weeks, as hard as that may be.

Please post when you get your results.

Take care
 
Thank you everyone, not what I really want to hear regarding the asymmetry, my hope is that not being able to use the calf muscle for 6 years due to neuropathy is more the reason for the atrophy, plus no other significant weakness to speak of as of yet, the neuro saw all of this as well and told me that she did not feel I had ALS but that we will do tests as she had to rule it out, although the days compound the worry. I have 3 kids and a wife, don't need to tell you all how the thought of them is affecting my concern, bless all of you as I realize you are dealing with the reality of this disease, I am not ready for this to be my reality, will remain hopeful and will share the news of the EMG. I will try to limit my questions until then as best I can. Thank you.
 
Disuse atrophy certainly happens. Someone who is casted for a fracture will see it when the cast comes off. And ALS is far from the only thing that has asymmetric symptoms

We understand waiting is hard. It is good the neuro thinks it is unlikely to be ALS
 
Well I had a melt down this morning, woke up hurting in shoulders, hands, feet, afraid of what this is and the potential impact a diagnosis will have on my kids, 2 on college and one in 9th grade, but I cannot go through the next 2 weeks crying, just had to share as it is so hard to not tell close friends yet as emotions build up inside, any advice on handling these emotions is appreciated,
 
Diffuse pain such as you describe coupled with normal strength in those areas argues strongly against ALS, as your neuro noted. New or worsening spine issues, for example, are much more likely. When was it last imaged?
 
You do see you are getting ahead of yourself? Not only are you not diagnosed but you said the neuro said it was unlikely

Get out and do something this weekend. Keep busy. If that doesn't work go talk to your pcp on Monday. Stay away from here until you have results then come tell us. Being here can only scare you
 
Cowboy,

Try to occupy your mind with other things. If you are anxious or depressed it will magnify the pain.
 
I have been trying to move on awaiting my EMG but some things have happened over the last few days and I would appreciate feedback.

I have huge waves of fatigue, especially tonight while eating dinner. I have also had a indention in the left side of my tongue appear and upon opening my mouth it moves on its own, then it lays flat, only once, then flat. I have no speech issues or loss of tongue strength.

I had a Dr's apt yesterday at a pulmonologist and they did a spirometer test and my function came back as mild restrictive lung disease, the Dr. asked me if I was a smoker, family history anything, I told him no to everything, did tell him I am going to have an EMG next week to look at ALS, he looked up and said, ALS, that would explain the test, he then asked me to stick out my tongue and noted that he saw it moving, he said you should be bale to see it in a mirror, he then pulled back and said, I am not saying you have ALS, but it would explain your test. His comments obviously concerned me and we went over a few other things and I left.

I spoke to my PCP and he said these tests are very subjective, he recommended retesting in a hospital, I have been redoing the test on my own at home and feel I could have done better at inhaling more if I knew what to expect. I am under a tremendous amount of anxiety, my blood pressure yesterday was 142/100.... could anxiety be causing a lot of this? I had none of these symptoms to speak of on Sept 8th, and now I have all of this going on. I am also having trouble sleeping flat at night, waking up every 2 hours.

My question is, could ALS progress this fast in just 17 days? I have no clinical weakness other than a right calf that I cannot do a calf lift on and have not been able to in 6 years. They also noted that I struggled to stop them from moving my foot outward, the Dr. noted that it could be related to the calf. The fatigue and tongue have me concerned, I am also twitching primarily in my right thigh, but also all over the place from eye, to abdomen to left wrist etc. Any feedback is much appreciated.
 
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No. Your posts are filled with non-ALS stuff, but you are concerned about ALS. Your doctors are not concerned about AL, either.

The doc who said that ALS would explain your tongue--that was irresponsible, in my view, to say to a nervous patient that one symptom is a included in ALS.

Normally, when we see a doctor at any office visit, they will observe you as your sit, stand, speak, and listen. Ten thousand possible diagnoses go through their mind in a minute. But they know that we did not attend 8 years of intense training, so they know that we couldn't possibly follow their thinking. To even mention a fatal diagnosis--unless they had very strong suspicious, is just plain irresponsible.

At the onset of ALS, fatigue is not a defining factor. My wife had no fatigue, no pain, no twitching at the beginning. She just squatted down at the bookstore and fell over to the floor because one of her muscles didn't hold her up.

I won't try to diagnose you and I hope no one else here pretends to be a doctor, but I will say that there is no reason to think about rare fatal diseases.
 
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