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Fear of ALS
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Fear of ALS

I am a 26 yr old female.  About 13 mos ago I began experiencing fascilitations all over my body.  I went to a nero who said it was BFS.  I also have an itchy crawly feeling on skin at times.  I had a normal MRI and all blood work up normal.  I then had a horrible case of sciiatica and an EMG showed instabililty of the sciatic nerve.  I was sent to PT and it really helped.  The pain has subsided.

My current fear is ALS due to a small dent in my quad muscle about two inches long that runs horizontally (left leg).  It is more evident when my muscle is flexed.  It looks lioke two buldges with a dent running through it - very slight and would be hard for someone to see.  I was able to find others on the internet w/ same dent and noone knows what it is.  My fear is atrophy.  I haave very muscular legs from cheerleading and gymnastics and I work out a lot.  I twitch a lot in the morning when I stretch after sleeping - it sets off firewoors in my tummy.  I have never had a bit of weakness and nero exams were normal as well as follow up EMG 6 mos ago.  Does the dent sound like muscle wating that is eenin ALS.  Both quads are still the same size.  I am terrified b/c my left foot arch has been slightly twitchin fot the last 9 days - every five misn or so in one sopt.  Seems to subside at times.  

Pleae let me know if you think ALS should be a concern or if you feel the dent in my quad and foee twitch are unrealted.  I really do nto want to make another very expensive trip to the nero unless you feel it is necessaey.
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Avatar_n_tn
First of all, keep in mind that I am unable to diagnose you because I am unable to examine you, this forum is for educational purposes.
   From the symptoms and story that you describe, I do not think you need to be worried about ALS (amyotrophic lateral sclerosis-also called Motor neuron disease).  Fasiculations are small twitches in muscles that do not lead to movements across joints.  Fasiculations can be found in normal people, after exercise, with metabolic disturbances, after some viral infections and in some neuromuscular conditions (including ALS).  Thus, fasicualtions are non-specific and are only "concerning" if additional features of neuromuscular disease are present (weakness or atrophy being the most important).  The "dent" in your quad that is best seen with flexion, sounds like muscle definition and does not sound like atrophy.  If you are concerned about atrophy, you can measure your thighs at their maximum diameter and compare the two sides (should be close) and measure them over time.  With 2 normal EMGs, no weakness or atrophy I would agree that it sounds like benign fasiculation syndrome.  I would recommend that you have your electrolytes checked (complete metabolic panel plus magnesium and phosphorus) to make sure your electrolytes are stable.  Avoid any diuretic or "weight loss" pills that can cause metabolic imbalances.
I hope this has been helpful.
20 Comments
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Avatar_n_tn
Thank you for your help.  This site is amazing.  The dent in only in the left thigh.  My finace is deployed and I think this is my anxiety manifesting itself.  I cired myself to sleep last night staring at the dent in my left thigh.  It just appeared one day.
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Avatar_m_tn
the "dent" is the space between two "bellies" of the quadriceps muscle. I do not think it has anything to do w ALS. sounds to me like you need to relax and go see a funny movie and eat some Milk Duds.
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Avatar_n_tn
I have had the same twitches you write about in your post.  I started to take magnesium and in time they went away.  I really don't think you are in the beginning stages of ALS.  I would think after 13 mos you would have experienced weakness by now.  I know it is hard to let go, but I hope you can.  I would also suggest that you stop reading the internet for several days and see if things improve.  All my best.
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Avatar_n_tn
Thank you everyone.  I hate being so wrapped up in myself.  I pray that Ican have a period of peace.  After a year of really bad pain in the rt leg last year, I keep feeling like somethink is going to creep up on me.  I can't stand that such sad diseases exist in the world - it scares me and breaks my heart.
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Avatar_n_tn
While I agree, that, most likely there is nothing wrong with you; I am not responding to you as a medical doctor and therefore I cannot say that there is nothing wrong with you. You need an exam to be sure of that, and, to just think that can be dangerous.
I suggest that you see your family doctor and go from there. Stressing on the other hand will get you no where though I understand that you are worried.

Good Luck!
JCmcc.
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Avatar_n_tn
Also, to everyone here telling her that she does not have Amyotrophic Lateral Sclerosis: Yes, it is highly unlikely but according to the forum rules and regulations telling people that "they do not have anything wrong with them" or that "you do not have ALS" is wildly inappropriate.

Thanks,
JCmcc.
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Avatar_n_tn
I went to my neuro and he did an exam - he said I di not havr it and to stay off of the internet.  Ican still see the big dent - I am still worried even after he said not to be.  I am worried it is in the early stages.  The dent is horizontal and very hard.  only anout an inchin diam and more obv when I flex.  He did not know what it was - said maybe fat atrophy.  He made me do all sorts of exercies an there is no weakness.  My left arch twitches every five mins or so, not really fasic, just one little twitch.  Iam still very scared.  No weakness anywhere at all, lots of energy, etc.  Have been twiching for over a year.  Neuro said this is benign and asked me bofore I left if he ws able to convince me.  I am not convinced b/c of the small dent.  Does atrophy in ALS start with a dent in quad - my neuro saud no.
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Avatar_n_tn
I went ot neuro and he said nothing is wrong.  Can you belive I am still worried?
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Avatar_n_tn
If you can't believe your neurologist, then you have other issues that counseling or therapy may help you address.  I wish you the best of luck.
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Avatar_n_tn
Dear, "nd10"

   I am sorry to hear of your continued fear but I am also excited for you to learn that ALS appears to be out of the question for you, and that, it also appears that your neurologist saw nothing else wrong with you.
   The dent is odd, I agree, but if he believes it is benign he is more than likely correct. He would take a great danger in just telling you that.
   If the fear continues to be a problem for you, you may want to consider seeing a neuropsychologist. It is interesting to learn how fear and the mind can have devastating effects on our Central Nervous System. Many physicians believe that the worst thing for medicine was that of the theory of Descartes which separated the mind from the body-truly-they work hand in hand.

Good Luck!
JCmcc.
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Avatar_n_tn
HE TOO SEEMED TO THINK THAT THE DENT WAS WEIRD.  HE COULD NOT SEE IT UNTIL I STOOD UP.  HE FELT IT AND SAID IT WAS FINE.  YOU SEEM TO KNOW A WHOLE LOT - I ASKED HIM WHAT MUSCLE WASTING LOOKS LIKE IN EARLY ALS AND HE DID NOT REALLY PROVIDE ME WITH AN ANSWER.  WOULD IT STAART WITH A SMALL DENT IN THE LEG.  WOULD IT COME WITH WEAKNESS.  THESE ARE MY QUESTIONS.  I WONDER IF IT IS FROM LEANING UP AGAINST SOMETHING???????
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Avatar_n_tn
HAS ANYONE EVER HEARD OF A HORIZONTAL DENT IN LEFT LEG?  NO WEAKNESS - JUST SHOWED UP ONE DAY.  NOT VERY NOTICEABLE - HORIZ VALLEY IN LEFT QUAD?  PLEASE LET ME KNOW IF YOU KNOW WHAT THIS COULD BE.
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Avatar_n_tn
Dear "nd10"
  Again, I am not responding to you as a medical doctor and I can only go based on my knowledge and what you are sharing.
  If you are not accepting this neurologists opinion, seek another. Was he a neurologist who specifically treats ALS? If no, remember, that you should seek out a physician who specifically works with ALS. If then, another neurologist says no go on ALS-let it alone. If he was one who specifically works in ALS-leave it alone. This is for your own good. I have no answers on the dent, it is odd, and I am not sure of how long it has been there. I highly doubt that it is from leaning on something-it would be gone by now. Such an effect should be momentary.
  In all of my studies I fail to see any correlation to wasting or to ALS in what you report nor in that of any single neurological disease (speaking of this dent).
  It is frustrating not to know. But, if you feel over all health aside from the annoyance of a dent-try to forget it for now. You will be amazed to see how the system can be effected by the mind.
  I continue to recomend a neuropsychologist or a psychotherapist for you.

Good Luck Nd10.
JCmcc.
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Avatar_n_tn
please excuse all if the misspellings in prev postings.  I am frantaically writing at work most of the time.  I noticed the dent about one month ago.  I had gone running the day before.  I live in a large city and the neuro does treat ALS.  He said he sees about 5 cases a year and it is a very easy diagnosis.  He said weakness is always there, along with fasic in the back.  I know that he would want be admitted to a psych ward if I called demanding to see an ALS specialist.  I guess I have to leave it alone for now.  I am sure ifi ALS started with a groove in the quad I would have found out about it by now.  I have googled dent on leg and found lots of people with the same thing, somw who have even had MRIs, biopsys, etc... to no avail.
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Avatar_n_tn
Christie04,

You do not know that "because (she) "can't believe her neurologist (she) has other issues" that therapy should address.  Although she probably does not have ALS and possibly has nothing neurologically wrong with her, she has an unexplained dent on her leg and she needs to find out what is causing it.  Strange things don't happen for no reason; I know.

Neurologists are not God.  I have been sick for 13 years now with unexplained/undiagnosed medical problems.  When they clearly became neuro-type symptoms 7 years ago I went to see a neurologist (after being dismissed by rheumatolgists, cardiologists, etc.).  He, including 5 neurologists since him, also suggested I needed to see a psychiatrist and/or my symptoms were psychomsatic in origin, and sometimes I was extremely ill and had very debilitating symptoms including significant trouble breathing and swallowing, but still nothing I could say or do could convince them that my symptoms had an organic basis.  The only one who didn't write me off as psychosomatic was a neurologist I saw back in '91 when I had an isolated Horner's syndrome (when I was feeling fine), but when I requested my records in '99 they mysteriously disappeared.  He knew I had something real--he didn't have to take my word for it it, he SAW it--but he failed to work me up for it and told me at the time it was probably benign.  Well, it WASN'T benign.  It was the precursor of things to come.  

I always suspected it was related to the later symptoms, and it turns out I was right.  I have maintained since '94 that I had an autoimmune disease and needed to be on immunosuppressive therapy, and I was right.  I have maintained since '99 that I had a neurologic autoimmune disease, and I was right.  I apparently knew more about what was going on with my body than the neurologists/other doctors all combined.  As I said, they are not Gods.  People believe what they want to believe according to their own particular personal biases, and that includes physicians as well.  Maybe it's their psychiatric training that gets in the way-I don't know-but I was treated far worse/dismissed by the neurologists I saw than any other kind of doctor.  (And I am not saying their aren't patients whose complaints are psychosomatic or who worry unnecessarily about their health/hypochondriacs; of course there are.  Doctors just need to start doing a better job differentiating between those whose complaints are psychosomatic and those whose aren't.  

ND10's neurologist might be a good doctor who listens and is also quite knowledgable, but just because she doesn't "listen" to him/her or any other doctor for that matter (I'm not suggesting she has ALS, just that she is not crazy for wanting an explanation for the dent in her leg) doesn't mean she needs to be in therapy.  

Doctors have a lot of power.  No diagnosis means no treatment, and if they choose (and it is a choice) not to believe a patient's complaints have an organic basis, then there are going to be a lot of sick people out there whose prognosis is going to be worse (like me, for instance) courtesy of their doctors.
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Avatar_n_tn
Dear "Annie62"

   I want you to know that I agree and loved what you wrote toward the end of your message regarding the absolute power of doctors over treatment=life. We Deify them in our culture, but really, it is as simple as a food server. You pay for a service and you get it-folks need to see this and come together-they work for us.

Px,
JCmcc.
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Avatar_n_tn
the dent has been there for a little over a month.  I noticed it the day after going running a in the hills.  i think it might be a torn muscle?  It is the same circum as the other one.
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Avatar_n_tn
Dear "nd10"
   I am not a medical doctor and at this point we are playing a guessing game. I truly suggest that you first go to your family doctor and if that does not pan out for you to request referral to a Rheumatologist. If this turns up nothing I would even suggest a visit to your local Chiropractor. The reason for this is that they are doctors of a particular kind, and too, have an outstanding understanding of physiology and the human body. A last end might be seeing a Pathologist.
   Unfortunately there is nothing else that I can offer for advice. I do not discount your concern and a dent is not psychological. You obviously care a great deal about your body and that is a good thing. Actually I re-read your previous statements and was going to write you today and withdraw my recomendation that you see a neuropsychologist. I suggest the aforementioned process.

Good Luck!
JCmcc.
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Avatar_n_tn
Thank you.  I appreciate what you wrote.  I also agree with your take on doctors.  They are definitely service workers/servants of humankind, and the role they play in our well-being/lack of well-being is obviously crucial.  I mean, what is more important than good health/life itelf?  If you don't have those things you don't have anything.
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