Old 05-16-2018, 11:30 PM #1 (permalink)
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Default Question about atrophy (with photos)

Hello everyone, I have a previous thread here:

Deeply Concerned

I do not want to waste anyone's time, and am thankful to Laurie for her valuable insight already.

I am posting because I am would really appreciate anyone's input on their experience with calf atrophy in ALS. A very quick summary: I have had massive, non stop fasciulations for over 7 months now and 3 EMGs, 2 of which were in China and one by a reputable doctor in the states. The last one here made me nervous because there were tons of fasiculations and what I perceived to be fibrillations (metronomic pops at rest) that the doctor seemed to dismiss. I know how arrogant of me that sounds and I don't mean to be. Just feel it's better to give full disclosure. I never received the report unfortunately.

I also have perceived weakness and, most worryingly, confirmed atrophy in my left calf via photos. The neuro I swear at Virginia Mason acknowledged she saw "change in the shape of the muscle" but did not call it atrophy.

I really, really don't want to be obnoxious but the shape and size of my left calf has me terrified and I am wondering how anyone who truly knows ALS experienced calf atrophy. I have been taking photos of my calf since this began and the shape has changed. The left one is considerably smaller (not how it used to be) and there is a sizeable chunk of muscle missing (which I mentioned in my last thread).

The easiest way to get input is to just post photos so I'll do that. I really, really appreciate it and once again am thankful for any input.
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Old 05-17-2018, 12:34 AM #2 (permalink)
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Default Re: Question about atrophy (with photos)

I don't see anything but calves in those pics. Where is the "confirmed" atrophy, by which I mean, who confirmed it? How were things left at Virginia Mason?

VMMC can post an EMG report on your portal -- just ask. Then if you like, de-identify and post it here. As for pops, something tells me you weren't able to completely relax your muscles on command, and all pops aren't created equal anyway. If there weren't nerve impulses running through your body, you wouldn't be typing.

Still not hearing or seeing any evidence of ALS. Weren't you going to follow up w/ your PCP?

Best,
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Old 05-17-2018, 12:37 AM #3 (permalink)
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Default Re: Question about atrophy (with photos)

TheGabe, last paragraph,

"The easiest way to get input is to just post photos so I'll do that."

I don't believe you will get the input you may be hoping for.

Then...

"The neuro I swear at Virginia Mason acknowledged she saw "change in the shape of the muscle" but did not call it atrophy."

Maybe someone here may disagree with a Neurologists opinion from Virginia Mason.

I doubt it.

Just noting... in your standing picture your left leg appears to be further back than your right leg or your left leg is shorter than your right by the difference in knee height. An entirely different problem.

Follow through with your Neuro.

PS. Review igelb's (Laurie) last reply (4/13/18 ) to you when the Thread was closed.

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Old 05-17-2018, 03:34 AM #4 (permalink)
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Default Re: Question about atrophy (with photos)

Hello, I really am sorry to be back asking more questions.

I do see the difference in leg length, thanks for pointing that out.

I did follow up with my PCP and it's extremely frustrating because he is refusing to refer me to another neuro. He wants me to see a therapist, which I have already been doing, as he thinks I'm OCD about this, which I definitely am. The problem is that I'm self aware enough to both know that I'm OCD and experiencing some real symptoms of something at the same time.

He basically says that he can't do much better for me than I already did at Virginia Mason; the problem is I was extremely unsatisfied with that experience. Dr. Wu did not elaborate at all on what she saw on the EMG and sort of rushed me out. The most bewildering part is that I can't seem to get any report; it's like one was never created. It's not on my online portal and I called and they said they would send it and nothing ever happened. To make matters worse, I read reviews online of Dr. Wu from her time at Baylor where people with legitimate neurological problems had her simply blame the issues on being psychosomatic, only to be diagnosed later. This is really worrisome because it's exactly what happened with me- she basically said I was stressed and that's why I was having fasiculations.

The problem is, it's now months later and they are getting dramatically worse, with huge ones, lightning one's, and constant rhythmic pulsing on every muscle in my body I can feel under my skin with a finger tip. The ones I can see also don't look like what I've seen from BFS- BFS twitches seem to be a sort of sucking in of the muscle in one particular place, before pushing back out. Mine scatter all over the muscle group they're in and never pulse in the same place. They are very fine and difficult to see without proper lighting, but I sure can feel them.


I guess what I am trying to find out but have not so eloquently articulated is how leg or calf atrophy related to weakness for those who have experienced it. I ask this because I am positive my calf has shrunk; I'm also sure that something feels strange in my left leg (a heavy feeling is the only way I can put it) and that when running now I can barely make it one mile before I am unable to continue to dorsiflex the foot well. Basically, it's like my ankle gets fatigued and I can't continue to pull it up. I don't have this problem unless I run, but even walking it's like I am hyper aware of my foot and trying to hold it up.

What I am trying to find out via the Internet (and have been unsuccessful at and thus resorting to bugging people on this forum) is a small amount of atrophy or muscle shrinkage would already lead to drop foot or the like. Was that anyones experience, or did drop foot come first followed by muscle atrophy later?

I am really puzzled by left calf- smaller, weaker (when doing calf raises and the like) and dramatically squishier
and more flaccid than the right... I guess what I am trying to figure out, and I know there's no magic bullet, is if this atrophy or whatever it is was from ALS, would I still be walking? I'll attach another photo to try to make it more clear how different my left calf is from right.

Once again I really am not trying to be a bother... I truly am experiencing some weird stuff and am pretty freaked out.

Thank you
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Old 05-17-2018, 04:16 AM #5 (permalink)
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Default Re: Question about atrophy (with photos)

Hey bud-

I recommend you see a physiotherapist. There is no way to describe atrophy adequately and in a way that is acceptable to someone who is hypervigilant and comparing what is likely normal asymmetry to muscle loss due to neurological issues. You can post all the photos you want, but no one here can provide you the feedback you are looking for. A physiotherapist can give you an hour long assessment- strength, gait, structural, postural, etc- and provide documentation of their findings, including baseline strength measurements. A physio knows bodies. If a physio is following you and sees issues, they can provide their professional assessment to a gp or neuro to back up your subjective observations if your doctor is not giving you what you want.

Here's the thing, no one here can provide you a clinical assessment. You've already been provided multiple responses on two separate threads based on the info you've posted- more won't really help in any meaningful way. You can complain about the incompetence of whatever doctors you've seen and insist you know more- and that could be true, or maybe not. However, it really gets you nowhere to be sitting on this forum. If you read the responses you've already been provided, you will see that folks don't really think you belong on this forum- which is a good thing. There is literally nothing people here can do for you except advise you to continue to seek proper in-person medical care. A physio may have some more insight for you, but if you insist you have neurological issues, only a neurologist will be able to provide you the information you appear to be seeking.

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Old 05-17-2018, 04:59 AM #6 (permalink)
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Default Re: Question about atrophy (with photos)

Hey there shiftkicker, thanks for your reply. What you say makes sense. I guess I am struggling with the medical system and what not and am coming here because it's one of the few places I can actually talk to people who are knowledgeable about these bizarre and terrible neurological issues- I haven't been having much luck getting anyone to see me/finding any neurologists in network with my barebones insurance.

I was actually coming on before bed because I forgot to ask one major question I had about ALS and how it works (and one that could perhaps shed a little light on my situation).

I doubt there is any clear cut answer to this question and it's kind of theoretical but I'll give it a shot- suppose one is in the early stages of ALS affecting the body.

One limb is affected (true weakness) but all others are "normal" except for extensive and non stop fasiculations indicating they may be "affected" to some degree (one question I have is in true ALS whether fasiculations everywhere in the body indicate that every part of the body is already undergoing degregation). My question is, given this situation, if one does strength training, exercise, lifting weights, etc., Is it possible to strengthen other parts of the body (i.e. both become objectively stronger and add mass/girth) that seem unaffected despite definitively having ALS and it already taking one limb? Or is it nearly impossible to strengthen an ALS affected limb at all, even one that is only "minorly" affected and not showing any weakness but is only fasciulating continuously.

I ask this question because I have been going to the gym frequently to try and lift weights and strengthen my body as a way to encourage myself that I am OK, at least from this particular malady. I am seeming to add girth and weight in most parts of my body except for the troublesome left calf, which stays the same despite the right one getting bigger.

Gosh I hope all that made sense and I apologize for writing so much... I never was any good at editing much of anything.

I will continue to try to get to the bottom of it on my own. I just thought I would take a shot at posting a picture to see if it looked similar to something anyone else has experienced. I hope I don't belong hear basketball well, although I have read alot of posts and really admire/enjoy some of the people here. Your recommendation on a physiotherapist is a good one.
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Old 05-17-2018, 09:28 AM #7 (permalink)
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Default Re: Question about atrophy (with photos)

Thegabe, your persistence is notable.

It appears you are trying to convince yourself you have ALS. Maybe knowingly or unknowingly.

Apply your persistence to your Neuros. A suggestion I have made to others... copy and print out your posts and have your Neuro and other doctors read them so your don't forget anything. They won't be disturbed to read you doubt them... you certainly won't be their first. And... they are speed readers. It will be a lot faster for them than you vocally going on and on.

As you can see/read your persistence... isn't working here.

Shiftkickers reply above is spot on.
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Old 05-17-2018, 12:24 PM #8 (permalink)
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Default Re: Question about atrophy (with photos)

I agree with all the responders above.

Did a neurologist ever confirm weakness on your exam? Thatís really the key test, because no objective weakness means no ALS. Perceived weakness is not the same as objective weakness documented by a skilled physician or physical therapist. Fasciculations and change in appearance of a limb are meaningless in terms of diagnosing a motor neuron disease unless accompanied by documented objective weakness with failure of muscle function.

Iím happy to tell you you donít belong here.
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Old 05-17-2018, 03:57 PM #9 (permalink)
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Default Re: Question about atrophy (with photos)

Quite simply the fact the neuro didn't see anything worrysome on the EMG puts you in a good place. An EMG will pick up nerve issues long before you would notice symptoms. They figure you need to loose 70% if innervation before a muscle fails. So presenting with left drop foot like me, the drs would see loss of innervation in other parts of the body on EMG exam. That's the good news. The bad news is you are obsessing over having a disease you don't have. This is obviously interfering with your life. As one well acquainted with the black dog, my test for how I am doing is; Am I reacting out of proportion to what is going on around me? You are. Get some psychiatric help before this ruins your life.
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Old 05-17-2018, 07:05 PM #10 (permalink)
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Default Re: Question about atrophy (with photos)

I'm sorry to bother everyone. I swear that I am listening to everyone's input and that I am not trying to force my way into being a member here. I know how bad this looks. I promise that I am doing everything in my power to continue seeing doctors until I figure things out. I really am not trying to be a nuisance; I'm just utterly confused by what's going on with my body and things only seem to be getting worse, which prompted me to come back here.

I attached one more photo that better illustrates the difference between my calves. I can't figure out what could cause this without any sort of back pain. I reiterate that this difference is new, chronologically following the onset of the twitching.

Thank you all for your time.
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Old 05-17-2018, 07:11 PM #11 (permalink)
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Default Re: Question about atrophy (with photos)

Gabe,

If you're not trying to be a nuisance, bother, forum member, or a pain, you would not have come back to pester the members that have so kindly and patiently answered your very lengthy posts.

As Vincent suggested, please go get psychiatric help before this compulsion ruins your life.
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