Old 04-13-2018, 01:50 AM #1 (permalink)
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Default Deeply Concerned

I want to keep this thread short as possible- tough to do since my story is long.

I have read all stickies and have in fact been lurking on forum for months. I know everyone here my name as creepy as it sounds. I have never felt so deeply empathetic toward a group of people as I now do toward pALS. Have researched BFS and many neurological conditions with rigor, including reading tens if not a hundred academic articles on ALS.

I am a 28 year old male from Seattle who has been in fantastic shape my entire life. Competitive basketball player, avid backpacker, etc.

August 17- Strange virus while living in China. Night sweats, rash, the like. Notice a twitch in left calf. Thought nothing of it.

September 17- Wake up one morning to a feeling of weakness in left leg that has not gone away. Accompanied now by persistent twitching in calf. Feeling is difficult to explain; sort of like leg is heavy. Walking feels strange (still does) but no one says they notice anything.

October 17- Twitching spreads. True fear sets in when I notice what I insist is atrophy in my left calf. There is absolutely, without question (confirmed by photos I combed through of my leg in the past) a palpable chunk of muscle missing in the thickest part of the left gastrocnemius. The entire muscle is squishier than the left and measures ~1cm less than the right.

October-November 17- Two EMGs while in China at a fairly reputable Western hospital. Doctors clear me, though the EMG reports list voltages and polyphasic % that I find suspicious. Return to Seattle.

January 18- Go to ALS gold certified Virginia Mason clinic in downtown Seattle. See Dr. Xuan Wu. Seems unconcerned due to lack of clinical signage and my strength. Reflexes slightly brisk but bilateral. Upper motor signs pretty much absent except for "a beat" of clonus in right leg (normal leg). Does not confirm atrophy but barely looks. Offers EMG, which she conducts herself. LOADS of fasiculations. This is where I start to sound crazy- When the needle was in my left leg I am nearly positive there were fibrillations and sharp waves. Classical "raindrops on a tin roof" sound and clunky sharp wave sound. Nonetheless she seems unconcerned and says EMG is clean; leaves me feeling simultaneously suspicious- (because I am a bright guy and did loads of research and YouTubing {I know how it sounds} on ALS positive EMGs and I swear that leg did not sound right- and shameful for doubting the acumen and even ethics of a PhD. level doctor (because I thought she was dismissing me and not paying attention on EMG due to my age, muscular build and remaining strength).

Current- Fasiculations have become intense- 24/7, 365 bodywide, from lightning twitches to thumpers to spasms. I do not get cramps out of the blue but can induce them very easily, especially in calves. When I say I never stop twitching, I mean it- even in places I can't see them, I can put a finger to the skin and feel the muscle twitching or vibrating deep under. Feeling in leg remains, though it is hard to say it has worsened. What is new is I get intense front of ankle pain (where it dorsiflexes) after running for any more than half a mile and I am now struggling to play basketball because of the intense pain in my left ankle after a few minutes. It's as if the foot does not want to be picked up anymore.

What is CONFUSING (and what I feel guilty talking about here, though I feel it is relevant) is that my leg is still strong- I can grab the rim on the basketball court jumping off the "weak" leg, can deadlift 350 pounds, and can still do all of the class hypochondriac tests- tiptoes, calf raises, heel walk, balance on one foot, etc. Trust me when I say that this is what has kept me from posting for so long, and I still feel trepidation in doing so due to the strength in my leg.

However, I am an intensely physical person who knows his body well. Thus, these things have me deeply concerned:

1- Definite sensation of weakness in my leg. Walking feels strange, awkward, like I have to put more effort into picking that foot up.

2- Fasiculations that DO NOT wax and wane and have grown steadily in intensity since the point they started. Now getting so intense that they ripply clothes and I am trying to hide them.

3- Most of all, DEFINITE atrophy (or something?) in the bad leg. The calf muscle palpates completely differently from the right, is confirmed smaller, and has a visible chunk of muscle missing that was there in old photos. If it's at all helpful (or if someone doesn't believe me), I am happy to post photos.

4- Cramping and trouble running, though that's less of a concern.


I am truly sorry for the length of this post. I am aware of the effort pALS put into reading and responding to these. I simply feel that telling the whole story (both why I think I may and may not have ALS) is vital to getting any insight here.

I have been holding off on this for months and am hiding this from my family and friends. Family in particular because it would absolutely shatter their hearts if I got sick and my sister has recently attempted suicide and I am concerned this would push her over the edge.

My gratitude is infinite.

Gabe
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Old 04-13-2018, 02:28 AM #2 (permalink)
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Default Re: Deeply Concerned

Gabe,

Did the VM doc see the fascics of which you speak, whether unaided or prompted? If you don't try to hide them, do others?

Did Dr. Wu discuss alternative dx? Did she refer you anywhere else?

Did the doc look at your before/after pics? Has anyone you play ball with commented on any differences in your style or leg?

Do you have a history of anxiety, and/or significant recent stress, losses, changes?

Have you been to any other Seattle doc apart from the ALS clinic, like an internist to r/o infectious etiologies via China or wherever else you've traveled, or an orthopod for the bad leg? You can probably guess that I'm going to suggest you do so if not. And it wouldn't be a bad idea to head up to UW or over to Swedish to diversify the evidence base.

Your EMG and history don't line up with ALS. But I don't doubt you have a problem, i.e. symptoms that can be improved.

Best,
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Old 04-13-2018, 02:55 AM #3 (permalink)
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Default Re: Deeply Concerned

Thanks much for responding Laurie. I was actually hoping you would respond given your breadth of knowledge and being a fellow Seattleite.

I believe I can answer your questions.

Thanks VM doc did see some fasics in my calves, though when I saw her in January they were not as widespread. She simply remarked that she saw them; didn't really say much else on that. No one else has noticed my fasics apart from my girlfriend (who is currently back in China and the only one who knows about my situation). While cuddling she can feel my body firing off in all different places.

Dr. Wu was very insistent that it is anxiety based, which honestly just makes my BS meter go off. I understand the vaguearies of these neurological illnesses and how hard they are to pinpoint, but I was also a psychology major and am in tune with what stress does to the body and it DOES NOT do this. Hell, I went to Hawaii last month and sat on a beach for a week- I twitched the same amount there as I do here. She did not really offer any other diagnosis apart from from BFS. Needless to say I was not impressed.

Unfortunately I did not show Dr. Wu NY before/after pics, but this is partly because she acknowledged that the two calves looked different. She said she believed that the strange virus I had in China had damaged the muscle but I just haven't been able to find much research to back that up as a legitimate possibility. I did show her my EMGs from China which she read, but given that I can read Chinese she did not really shed any light on them that I didn't already see. She said they looked fine.

The basketball thing is really interesting and actually something I've been thinking about throughout this ordeal. No one I play with has said anything. People have noticed I'm not quite as quick as I used to be- HOWEVER, I have been weight training and eating pretty intensely since moving home to Seattle and gained ~25 pounds, and I've attributed slightly declining basketball skills to just being much heavier than I used to be as I was always a bit of a rail (6ft 175, now 200).

What REALLY puzzles me is the "atrophy;" almost everything I've read on ALS indicates that if I had a literal CHUNK of muscle missing from my calf due to ALS atrophy, which I do, I would NOT still be playing basketball and able to jump essentially as high off the leg as i could. It is really bizarre and I just can't find anything to explain that part.

I no doubt have a significant history of anxiety and willing admit that it is probably playing a role in some of this. In fact, since this began I've had persistent thoughts of hurting myself, and I am intensely afraid of what will happen to my family if I do have ALS (my dad is 70, overweight with heart problems, my sister severely depressed and my mother a 5 {yep, FIVE!} time cancer survivor). I simply don't know what more they can take. The issue is that I am familiar with psychological issues and I am 99.9% sure that this is NOT psychosomatic. The twitching is absolutely insane and the feeling of weakness in my leg I can promise is not imagined. I have a concrete history of recent major change considering I just moved home from China after living there for nearly 3 years; the problem is all of this started IN China, months before I was moving back. I don't know where anxiety fits in this picture though I know it's a question worth asking.

I've been trying for weeks to get an appointment with swedish neurology, but they simply don't return my calls, even when I leave a message and phone number. I would really like to see Dr. Michael Elliot there. My current move is to see my GP next Friday and ask for a referral from him.

I am very, very lost.
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Old 04-13-2018, 01:27 PM #4 (permalink)
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Default Re: Deeply Concerned

I don't doubt you had something going on in China, Gabe. That doesn't rule out BFS since. Nor does twitching on a beach.

Dr. Elliott is a waste of both your time as he will do the same testing as Dr. Wu. As I said, serious LMN nerve damage having been ruled out by the EMG, I'd see an internist for blood work (you might also discuss the nutritional plan behind this eating/training, which sounds pretty intense and has its own tradeoffs) and consider an orthopod who can refer you to PT if indicated. And counseling for the anxiety to help you parse what's mind and what's body.

We don't have any independent validation as to the importance of the chunk/subjective weakness, but that's where you get it seen and addressed in context. As you know, esp. with a weight change, asymmetry is very common, even the norm if you will. 1cm is nothing.

If psych courses could give you the insight to self-diagnose, wouldn't they also be enough to keep you from destructive thoughts? Don't kid yourself. They're not enough to do either.

So it's on you now. If you care about your family as described, and obviously they would benefit from your continued presence, don't cling to a construct that's only going to hurt them and you. Make a move to help you all.
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Old 04-13-2018, 01:59 PM #5 (permalink)
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Default Re: Deeply Concerned

Thanks Laurie. I appreciate it. Everything you say makes sense.

My only question/concern that I was hoping (and I am fully aware that this question isn't really answerable, at least with confidence or accuracy) to clear even a little is relating to the perceived atrophy, as that's what has me most concerned given that it's pretty concrete.

I guess what I was hoping for was perhaps not even an answer but some insight or personal experience from someone as to whether atrophy is possible without significant weakness. What I've gathered from alot of reading here and other places is that it is not- most people seem to say that their atrophy followed significant weakness- but I've also seen some information to the contrary. [UGH, the internet] I am just so puzzled as to what could cause my muscle to change shape and be noticeably asymmetrical along with a strange feeling for 6+ months.

I completely understand if nobody can really add to this or clarify anything; like I say, it was just a hope and a bit of a shot in the dark given that VM didn't really shed much light on things and it is taking me so long to see more doctors despite my efforts.

I will pursue options when I see my GP at Greenlake Swedish this Friday. He's really good at parsing this kind of stuff.

Thank you for taking your time (and effort) and reading. It is meaningful to me.

Gabe
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Old 04-13-2018, 02:46 PM #6 (permalink)
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Default Re: Deeply Concerned

Glad to hear you are seeing the GP!

I will address the atrophy question but please don't respond. Give us a report after you see the internist.

Instead, walk/run around Greenlake (assuming you're somewhere near it, or some other place in nature) and enjoy the spring. Consider that the stakes for your dealing definitively with this worry are your continued ability to do that, and to help your family do the same. It's worth it.

Yes, changes in musculature are possible independent of weakness, real or perceived. I've got 'em. We all do. I don't mean I was born with one thumb way different. It got that way later, and in the opposite way I would expect -- more muscle in my non-dominant hand. Don't know why, but my fine motor skills are definitely asymmetric as well. Musculature need not mirror function or activity-- we all know musclebound guys who don't need to work out to stay that way, and really strong "rails."

As for your reading, in most PALS, weakness precedes atrophy. In some, my husband being one, the reverse is true. But my husband did not lose a chunk. Both his arms went to stick figure proportions and soon he stopped being able to lift them. Also, he had a pre-existing myopathy from another disease. There is nothing in the history of "atrophy first" cases that matches yours.

The fact that you had an illness preceding this change suggests that you have had a viral, parasitic or bacterial illness that may have affected your muscle. If you still have something treatable, that can be seen in the bloodwork your internist can run.

You had an EMG that did not show any abnormality in the nerves that control the muscles in your "bad leg." So any change cannot be down to nerve damage, full stop. (Dr. Wu may not be your cup of tea, but I've no doubt she knows how to read tracings -- she did a residency at Methodist, one of the leading ALS centers worldwide).

In sum, a distinct change that you are 100% certain have occurred, is not a hallmark of ALS. The only hallmark of ALS, besides an EMG that shows motor neuron disease, is clinical weakness that you do not have.

Enjoy a walk that PALS here would give a great deal for, and celebrate your good health.
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