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Justin111

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Hi all,

I'm a 26 yr old male. I began having extreme fascics all over my body, buzzing and vibrating sensations in my feet and legs, and shaky hands in April. Soon after the initial symptoms the left side of my face began to feel numb for about 5 days and I had what felt like slight trouble talking. This was shortly after my infant son passed away from a congenital heart defect and right as I was getting ready to take my last semester of grad school finals so I thought it was probably stress. I went to my regular doctor and blood work was fine but I have really brisk reflexes.

The fascics have calmed down a lot but I still have them all over my body but mainly in my calves, just below my calves, just above my knees, and the back of my legs. I also have almost constant cramping or stiffness in the outer portion of both calves. Additionally, I have had on and off pains in my hands, heat sensations in the hands, and tingling in the hands. Lastly, at times I have this feeling that my tongue just doesnt fit in my mouth right and that I almost have difficultly talking without a very slight slur.

I went to the neuro in July and again just last week. During the first visit he did a regular physical neuro exam and said that he thought it was just the stress of my son's passing and then on the visit last week he said he would like to wait another 3 months and see where we are then.

However, just tonight I was sitting in my chair and looked at my legs and noticed that I have a very noticeable dimple in my left leg muscle just below my calf and just above my ankle on the inside part of the leg. It is probably an inch by an inch and a half in size and dips in a lot. I am most certainly frightened because I have never had any real evidence of atrophy or weakness until now (in fact, I have continued to workout etc. with no noticeable effects on my strength). I can rub my hand over the area and feel a deep crater in my left leg and the same area on my right leg is perfectly smooth and feels like a continuous area of muscle. I also noticed that if I push the outer edges of the dimple area toward the middle of the dimple that the skin rolls into the dimple but if I do the same on the other side the skin pops upward.

Now my chief symptoms are (1) daily fascics, all over but mainly in the legs; (2) constant cramping or stiffness on the outer portions of my calves; (3) hand pain and sensations of heat in the hands; (4) intermittent tingling in hands, especially after I hold a phone for a few minutes and in the legs if I cross them for any amount of time; and (5) a slight slur at times.

I was holding out hope that all would turn out well until I noticed what appears to be the atrophy in my leg and of course I am now terrified. Has anyone had a similar course of symptoms or does this sound as horrible as I think it does?

Any thoughts would be appreciated immensely. Thanks.
 

rose

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Hi Justin, I am so very sorry about the loss of your infant son. No one should ever have to lose a child.

I don't really know what to advise you about your symptoms, obviously something is going on, whether its stress related or not, you will be able to tell with time. You do list several symptoms that are not usually part of a motor neuron disease (such as heat sensation and tingling)

From what I understand, muscle atrophy is much more cause for concern if it appears after muscle weakness, and you've said that you don't have weakness that you've noticed.

There have been some worried posters on here from time to time that have been constantly trying to measure their strength to tell if it is waning or not. I can tell you from personal experience that the weakness from motor neuron disease is insidious, it sneaks up on the person. One will notice the weakness in everyday activities first. Not so much like when you're looking for it, or analyzing it. I know in my own case I noticed the weakness way before any twitching set it, however, muscle cramping did precede the weakness. I just don't know if my muscle cramps that happened before other symptoms set in were part of my illness or unrelated.

Regardless, that you are not noticing weakness is a very very positive thing.

There is a member of this forum (Wright) with a medical background in this field, and when he sees your post he should be able to help you sort out what kind of causes you could be looking at.

I read your question to Happy about the photo she had of dents in her calves. I believe that she decided that they were just the dents that virtually everyone has right below their knee at top of calf and were no cause for concern.

Good luck to you, and hopefully there will be some replies from those that can give you more specific help. :)
 

Justin111

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Thanks for your reply.

May I ask you this: was your cramping constant and was your twitching constant? I have been holding out hope that everything would be OK because the cramping and the twitching are never constant but, like I said above, this dent in my calf has me terrified.

Thanks.
 

lydia

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dent in finger

Justin111,

I have some minor muscle atrophy that looks like a dent or depression in my leg around my ankle and it is a little bigger than a quarter and kind of hollowed out. It is only on the one leg, not in comparable spot on other leg. I did not know it was there when I first went to neurologist. I was already experiencing what I felt was serious and obvious weakness; neuro's interpretation was mild or subtle weakness (I think it was a 4/5 on some measure she did; subjective of course). Our "spots" sound like they are in the same areas.

A few days ago I noticed a small indent on left hand middle finger (the one that gives me all sorts of trouble typing). It looks as if someone pressed a 1/4 c. diamond engagement ring into my finger and held it until my skin was dented....except the dent doesn't go away. If you run a finger over it you can feel where the indent is without looking. Needless to say I am bothered by this. I have been having trouble with the fine motor on that hand for awhile. I "look" at the hand alot when it is acting up, but wasn't analyzing it or paying special attention to the fingers. Perhaps it has always been there? Did any of you experience random denting in your fingers (as compared to overall thinning; I have that in left forearm)?


I am so sorry to hear about the loss of your son.

Lydia
 

fmarino

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I remember Wright saying that you don't have muscles in your fingers (he said that your fingers are moved by muscles in your hand and forearm), so that is not muscle atrophy.

I think we are all looking at our bodies waaaaaaaaaaaaay too closely and finding things that probably don't mean much, but we somehow convince ourselves that they do.
 

BethU

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fmarino, I agree ... after seeing the neuro at UCLA in June, and getting confirmation of the diagnosed, I became convinced that practically my whole body was wasting away before my eyes.

I was astonished when I went back a week ago, and after a careful exam, the neuro could only find two small areas of atrophy about the size of quarters, in addition to my tongue. What she pointed out to me didn't look anything like the areas I had been fixating on, which turned out to be perfectly fine.

The only good thing for me about the diagnosed of ALS is that it has taken my mind off Flesh Eating Bacteria, which is what I used to assume was responsible for any weirdness I happened to notice on my body.

I know how scary all this can be, but spending too much time examining your body can drive you crazy. (I'm speaking as a woman who has spent hours peering into her mouth with a flashlight and wagging her tongue around, so have been there, done that. And done that. And done that. :))

Blessings to all of us, and hang tough ...
BethU
 

lydia

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dent in finger

I did not know that I had atrophy until my neuro commented on it (lower leg, forearm). And until my neuro removes the possibility of a MND diagnosis from her list of possibilities I will be examining my body with a level of scrutiny I have never practiced in my life, and with good reason. It is my understanding that this particular portion of the ALSforums (Do I have ALS? Is this ALS?) was created to allow those of us who find ourselves in this scary scenario a safe place to visit and ask questions, share concerns & observations, etc. without having our fears trivialized. It is true that every time my hand does not do what it is supposed to do I glance at it; sometimes I even go so far as to hold it up and look at the front and back! If that is looking at it waaaaaaay too much, well so be it. That is what I will continue to do I guess until I acclimate to its defective performance or it goes back to normal, or....other (worse? better?) things happen to take my mind off of it.

Lydia
 

BethU

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Lydia ... I'm sorry I trivialized your concerns. I didn't mean to, and I apologize. You're right ... this is exactly the place for you to share and to find reassurance and support. I was actually responding to fmarino's comment, but of course, your posts were on this thread, too ... I should have read the whole thread and thought it through before responding.

The reason I responded as I did is because I have done exactly what fmarino was talking about ... including silly things like the flashlight and the mouth, and all those other worries I mentioned. In my own case, it turned out that I was worrying about the wrong things, mainly because having ALS is still very new to me, it's scary, and I'm not sure yet what to look for or how it will progress. I appreciated fmarino's reminder to relax a bit ...

Anyway, I apologize to you again, and I hope that people more experienced with their ALS symptoms than I am with mine will provide you with the comfort and reassurance you need.

BethU
(I would make the little blushy face, but still haven't figured out how to do it.)
 

Justin111

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Thank you all for your replies, it has been really helpful.

I was wondering, however, whether anyone had any insight as to whether it is a normal pattern for atrophy in a leg to begin with essentially a dent in one of the muscles or would one rather expect leg atrophy to begin with the entire muscle just shrinking?

I do know that I am probably looking my body over far too much, but like Lydia said, I am hyper-sensitive right now to the fact that I may be very ill and if that is the case I need to prepare myself and my family.

Any info or further thoughts would be helpful.
 

olly

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hello everyone

i think we have all scrutinized our bodys with worry.
sometimes when you get the fasic's you seem enticed to watch .
when strange things are going on it is only human to get sucked into the checking routine,it would be the same with any other illness.

beth.
just click on the smilie you want,the blushing one is on the end.
or click on "more" and a box will come up with others on.

take good care.
caroline:-D
 

lydia

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hello BethU

Hi Beth, I wasn't referring to you. We posted simultaneously (almost). I just don't want to be told (in an insensitive way) that I am spending way too much time looking at my body when I comment on something I recently noticed. I waited more than a year after things started going to pot before I sought out a doctor. I was so out of tune with my own body that I couldn't even articulate at first what was exactly not right. Anyways, right now all of the other complaints that I have with soreness, stiffness, and cramps pale in comparison to not being able to use my hand properly. And I am only talking about one hand, not two, heaven forbid. Combined with my recent lack of arm swing experience, I can't imagine how people manage, what they feel, how they go on without the use of their hand(s) or arm(s). I think about it so much that I found myself doing this horrible bargaining...that I would swap the use of my legs for my hands and arms any day. What kind of thinking is that to have? Horrible, I know. So I guess right now I am a little sensitive about my hand!

Justin111, if you search using the word atrophy there are many old threads that are very helpful in describing people's experience with atrophy. I remember one of them in particular saying something to the effect that atrophy can be dents or thinning or a combination of both; I think the poster might have been quoting a neuro. The search feature can be really helpful.

Lydia
 

Justin111

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Thanks, Lydia. I have been trying the search feature and I have read a lot of great posts but apparently I am too new of a member to be able to access some of the pictures that people have posted etc. to get a better idea of what I looking for.

I just feel so frantic right now about this because this seems to be a fairly bad sign from what I can tell and what I have read. And, of course, I have a call in to my doctor who told me to call him immediately if I notice some change like this and I have been waiting by the phone all day but nothing yet. Sorry to rant.
 

rose

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Thanks, Lydia. I have been trying the search feature and I have read a lot of great posts but apparently I am too new of a member to be able to access some of the pictures that people have posted etc. to get a better idea of what I looking for.

I just feel so frantic right now about this because this seems to be a fairly bad sign from what I can tell and what I have read. And, of course, I have a call in to my doctor who told me to call him immediately if I notice some change like this and I have been waiting by the phone all day but nothing yet. Sorry to rant.

Justin, you're not ranting. I will send Wright a private message (as I don't think that you can yet) and ask him to look for your post. He should be able to give you some clarification and hopefully calm your nerves a bit.

Again, atrophy is much more of a big deal if it follows muscle weakness.... take care, :)
 

Justin111

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Thank you very much, Rose. I really appreciate your help.
 

BethU

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Thanks, Lydia ...

I've been doing a bit of bargaining myself ... like, "If only I could talk normally for 20 minutes a week to make phone calls, I'd give up ... (fill in the blank)"

It's a stinker of a disease!

BethU
 
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