Early ALS symptoms

[sbennes]

Hello all-

I am a 35 yr old male. I have been having some very concerning neurological phenomnea that I would like to have examined.  These symptoms begain approx. two weeks ago. Specifically, fasiculations in legs, feet and at times, other parts of the body.  Simultaneously, I have  a subjective feeling of weakness in the right leg: somedays it seems to involve the entire leg, sometimes just the quads and at others, the calf muscle only.  Curiously, this feeling of "weakness" also presents when my leg is at rest and not being used. I have done all the crazy hyperchondriac tests for strength such as squats, calf raises, etc. but there appears to be no objective appreciation in differences of strength. There seems to be no gait disturbance either.

To further mix up the picture, I have had the same feeling of "weakness" and associated twitches in the rt. leg 9 monthes ago which resolved after a week or so.  Even more mysteriously, two yrs. ago I was  experiencing many fasiculations, myoclonus in the rt. leg and positve Babinski (which was later negative on another exam) and "weakness" in rt. leg.  This, too resolved over a period of time.

Can one experience sensations of weakness in different, alternating aspects of the leg, even when at rest?  Does the ALS pt. initially notice sensations of weakness or do they notice subtle changes in wieght bearing activity?

Does the above presentation sound like a progressive neuromuscular disease like ALS?
Thanks for your time.

[CCF-Neuro-M.D.-PW]

The answer is no, although I cannot give a clinical diagnosis ovcer the internet, and you should have your exam findings confirmed by your local neurologist

Fasciculations are common and usually benign, due to a hyperactive thyroid gland, a benign syndorome, pinched nerves or just related to cold or exercise. In the absence of objective muscle weakness or wasting it is very unlikely to be ALS. Also, the widepread and aternating nature would suggest a benign form, quite common in your age group and not really mysterious!

Good luck

[timetowinarace]

You'll want the Doc's input but right off the bat you should not really consider ALS. Your too young statistically. ALS hits more often after 50. ALS can begin in many ways but an episode two years ago that has been gone for a considerable amount of time isn't very consistant with the usual progression. A reasonable amount of muscle twitching should be considered normal for most of us. I would look towards a pinched nerve, or a spinal colomn problem putting pressure on your spinal cord, or a peripheal neuropathy. At any rate, if you feel that your symptoms are progressing, you should be monitored by a physician to get an answer as early as possible.

[wmac]

I have gone through alot the archives and read als quesions. I was also wondering when they say twitching without weakness or muscle wasting are they talking about weakness that doesnt get better or comes and goes or comes and stays??? The doc replied to me that twitching without muscle weaknes is not als, but I did say I had some weakness in my hand twice this last summer but it got better! mmmm!!! Also the doc told me that widespread twicthing usually is not als. But one person said the same thing and the doc did not say that to him. One of the questions he replied to that this person had  what sounded like symptoms of als and that he should be checked out then I have read many of questions with similar symptoms and then the doc says it doesnt sound like als! Im a bit confused. I would just really like to know what the order of symptoms usually are. Weakness, do they mean like not being able to use the limb at all or tiredness, or stiffness pain, is pain associated with als? When they say it usually affects a hand or foot first do they mean hand literally or just fingers or the whole hand and fingers? Im just really confused I just would like some answers because im also freaking out here about my symptoms.
wmac

[motheroftwo]

Ive had als for over 5 yrs since I was 22 yrs old, believe me symptoms DO NOT improve period!

Als is a progressive disease it doesnt get better, the answers to 99% of your questions can be obtained from searching the net.

[snoopy_301]

Hope you find the answers you're looking for.  I can tell you that I share most of all your symptoms and they do not know what it is.  I was physically active and then one day my foot (rt) began to ache - then both feet - then my calves, quads, hamstrings.  I also have tingling in all of these areas and at times muscle twitchig.  I now have weakness and my rt. knee is bending back further and I was told this is due to the weakening of my leg muscles.  I've had MRI's of my brain, spine and two EMG's and a lot of blood tests.  One EMG showed a minor thing going on in only one muscle so the dr's. dismissed it.  All I know is this began SUDDENLY approx. 4 months ago - I am a 39 yr. old female and before this I was healthy and very active.  At times I do feel the buzzing and sensations on my face, arme, etc...., but I think that might be due to anxiety - because after such a long time, I must admit, this is really wearing on my emotions.  I am frstrated, hurting and am scared.  Again - good luck to you.

[wmac]

I am really really sorry that you do have ALS. How rare for you to of been diagnosed at such a young age. How are you doing with it?? May I ask what your symptoms were to begin with and how long it took for you to be diagnosed? As you can see there are many and many of us here with a few things going on and we are all freaking out and dont know what to do. My prayers are with you.
wmac

[calvo]

Hi all ,

Im a 38 year old male and am a racing cyclist . Three months ago I noticed twitching/fasciculation in my right quadracep . I'd had this before just like most people do from time to time so decided to put it out of my mind . It lasted for over a week so I went to my doctor and he assured me it was nothing to worry about . I then had some minor fasciculations all over my body for the next 3-4 weeks and went to see a neurologist who also assured me that I was fit and healthy . I have no weakness and am still able to cycle upto 120kms without a rest . I guess that suggests that I'm healthy . However , about a month ago I developed a bizarre "cold water sensation" mainly on my legs but sometimes on the upper parts of my body (inside upper arms and between shoulder blades) that only lasts a couple of seconds .
Am very curious as to what this is and am getting scared about potential CNS problems. Am seeing my neuro again today but he thinks Im a hypochondriac . I just want one question answered.........If I had ALS or MS would I be able to cycle 300kms a week without difficulty ? Your answers would be very much appreciated . Nick .

[wmac]

what is the typical als?
wmac

[motheroftwo]

"If I had ALS or MS would I be able to cycle 300kms a week without difficulty ?"

It would solely depend on what type of als onset you had & if you was in the very early stages of als, it would be possible to cycle 300Kms.

I can cycle (indoor exercise bike) 15 miles in 20 mins, my upper body is weaker than my lower.

I'm Not a Dr, but it doesn't sound like you have als, one major tell tale sign is also very brisk reflexes.

[wmac]

I cannot figure out how to get to your site I dont understand URL is not used.
wmac

[wmac]

I looked at your website, very nice. My question to you is, when you had stiffness in your foot was there any pain with it was it just your foot or your toes also? Did you  have any twitching, if so just in one localized area or all over body? Im guess im just really freaking out now. Please help!!
wmac

[motheroftwo]

Hi, it was stiffness in my left ankle, no pain or twitches.

9 months after my first symptom, i went to my GP who performed a manual neuro test, i presented with stiffness, clonus, and brisk reflexes.

If your Dr thinks you have a CNS problem he will perform a Babinski test (please see http://www.medterms.com/script/main/art.asp?articlekey=7186 for Babinski sign definition.)
Please dont try to perform this test at home, get a proper Dr to perform it.

good luck.

[motheroftwo]

Dear Mods, I do apologize for posting links on this site, i purely forgot, sorry!

[wmac]

What is clonus?
wmac

[patsy10]

Was your diagnosis given at a large, academic facility?
Has lyme been considered.

You just don't fit the typical als pt.

Lyme can cause all these symptoms.

[motheroftwo]

My neuro first dxed me with PLS, I wasn't convinced because i started showing signs of atrophy in my hands, I asked my neuro to refer me to a als specialist whom confirmed my suspicions of als.

I dont believe i have als but it could be my way of coping, i did have a Lyme's test a few years back & it came back negative, the test was just a normal blood test through my GP. I have however asked my GP to refer me to a Lyme's disease specialist & he is in the process of doing that. I know I'm grasping at straws & its a stab in the dark but else is one to do, i refuse to sit back & die.

To wmac: what is clonus ? An abnormality in neuromuscular activity characterized by rapidly alternating muscular contraction and relaxation.

[Warrior47]

I admire your courage and positive attitude and sincerely wish you all the best.

I have some health issues of my own and I hope you can answer the below questions:

What exactly were early signs of atrophy in the hands? Did the muscle between thumb and index finger shorten (atrophy?) first? Were the hands stiff and aching? Did the muscles between knucles on the outside of palm ache, specially when lifting? Was there any problem with wrists? Did the arms shake while lifting e.g a frypan?

Thanks for taking your time and all the best once again.

Jossan

[motheroftwo]

My hands started with stiffness on opening & clenching hand shut, followed by atrophy in between my thumb and index finger(as you described)then atrophy started near my thumb (palm side up)and my palms, then went onto the back of my hand.
No aches or pains apart from cramps, I do now have problems with wrists weakness due to forearm atrophy.

when i make a coffee, putting coffee & sugar in a cup is kinda awkward as my wrist/hand shakes & I have to guild the spoon hand with my other hand to prevent it shaking.

good luck. :-)

[Warrior47]

Thanks for your answer. I have some more questions and will really appreciate if you could take some more time to answer those:


Were both the hands affected at the same time? Was stiffness worst in the mornings or did it stay all the time? You said atrophy moved to your thumb palm side up, do you mean the thenar muscle? Did you have a kind of feeling of puffiness in the hands? Atrophy in palm, how did it look like?
Sorry, I am asking so many questions. I guess I am very scared.

Take care.
Jossan

[motheroftwo]

Hi, Yes in my case both hands developed stiffness at the same time but atrophy developed at different stages, I feel stiffer more in the mornings. No puffiness feeling.

Yes the thenar muscles, wasting of the palm & thenar look like this http://medicine.ucsd.edu/clinicalmed/extremities-left-thenar-wasting.jpg

Severe atrophy looks like this http://www.spectroscopynow.com/ftp_images/2X6-hand.jpg

good luck

[patsy10]

I'm no expert but by typical I mean female, young.  It's more common in males, older.

[wmac]

When your talking about stiffness that means hard to move??? And no pain right?
wmac

[motheroftwo]

slow movement stiffness, right no pain apart from cramp pain.

[patsy10]

My thoughts and prayers are with you.  I sincerely hope they are wrong and you don't have really have it.  I would go to any means to find another cause for your symptoms.

Just curious, do you have numbness and tingling or just weakness and atrophy?

[wmac]

Real quick, I was just wonder when you started getting the stiffness, did it come and go or was it here to stay and just got worse over time? Also, did tylenol or asprin help in the begining or not?
wmac

[motheroftwo]

First I would like to thank everyone for their prayers & well wishes.

Pasty, at the beginning I had numbness & tingling in my legs (lap area)before i noticed the stiffness,but numbness-tingling has subsided over the last several yrs.

Wmac, the stiffness (increased muscle tone)came & progressed, I have never tried or taken Tylenol or aspirin.

[motheroftwo]

I would just like to add that not everyone with als gets stiffness/increased muscle tone & no two people with als have the same symptoms.

Good luck.

[loret]

I have read the many comments and concerns regarding ALS or possible ALS and I have the same fears and frustations you have all expressed. ALS doesn't seem to follow any absolute path. I experienced a severe cramp in my lower arm last Jan. 2005 and from that I now have muscle wasting in my thumb muscle and arm. I can still function but with great effort and concentration. I do have fasiculations but since I have started taking 5000mcg methyl b-12 everyday and Bcomplex 100 twice a day they have not been as bad. The one symptome I have that is very uncomfortable is extreme cold in my affected arm. When that happens I can barely move my fingers. Does that sound familiar to anyone? I went to Mayo Clinic and was diagnosed in Aug. of this year with ALS. But so far it has not progressed anywhere else.

[wmac]

We are going to run out of posting room on this paticular comment site soon. I do have some questions for you. You can email at ***@****  My questions are: first you talk about fasciulations do you have widespread twitching or just in the effected spot? How bad was your cramping where your affected with the wasting etc..? Did you have any other symptoms besides what you described? Did you know about als before this or did you just know that was what was wrong? I have all over body twitching everyday, sometimes they are just a slow twitches and sometimes they are really fast. My hands hurt did you have pain besides the cramping? My gp doc thinks I have tendonitis because I have been cutting hair for 19 years. It hurts to touch my finger in certian spots by the knuckle and when I apply pressure. How old are you? Did any muscle wasting show up in your blood work or the anything in the protiens in your blood?? How long did it take before you started to get the wasting? Any info would be helpful to me thank you so much and you are in my prayers.
wmac

[merciful]

motheroftwo

     Sorry for your diagnoses. I have a question. Did you have an EMG or biopsy that showed chronic and acute denervation and reinnervation? I have had both (each leg) and those were the results. I have fasciculations and positive sharp waves with increased duration during polyphasic on EMG. I have axonal involvement. My leg muscles and feet are stiff and weak as are my hands. Doctor's do not know what to think other than saying it may be neuromuscular. I am a 48 year old female. Today is my B-day!

[Warrior47]

Thanks for your answers ! My thoughts and prayers are with you.

[loret]

I would like to say that anyone on this forum sight is welcome to e-mail me @ ***@****. Will try to answer quetions. My odessey started with a severe cramp in my right arm in Jan. 2005. The next day my index finger had very minor weakness. From then through now the progression has been very slow; Praise God.
It seems to be in just the right lower arm and hand;mainly thumb and forefinger. Fasiculations are localilzed in effected area and are daily although much less now that I have started supplements. No pain. Positive EMG; all other tests were negative for other causes. Through the process of elimination it pointed to ALS. Although I fell 6 yrs ago and have neck and upper back discomfort that radiates to the upper arm. My right arm is very sensitive to cold. It will be icy when I am warm everywhere else. When that happens my hand is almost paralyzed. Does anyone else have this problem?
Please write on my e-mail I look forward to comparing notes.
Loret

[jenni32]

Just a little info about myself.  I have been having twitches for about 3 years now.  They are pretty much everywhere.  They kind of bounce here and there, but are constant and very strong in my feet.  They are all over my feet, top and bottom.  I go through periods of weakness at times also.  Sometimes I cannot even hold the telephone.  My hand and arm will become very weak and start to shake.  I too went through the ALS fear.  I saw several doctors, none of who know what I seem to have.  I saw one doctor who thought I may have Issac's syndrome.  I then had a very expensive gamma globulin infusion with ofcourse no help.  I have also had twitches in my tongue and sometimes have difficulty speaking.  I have had two sets of EMG's both of which were normal.  Thank GOD.  I also get itching at the bottoms of my feet.  It's sort of an internal itch.(Weird)  I have now started on Lexapro just to stay sane.  Just thought I would share my info.  Just needed to talk.

[motheroftwo]

Happy birthday ;-)

I had several emg's, please see my last emg question posted on this site http://www.medhelp.org/perl6/neuro/messages/33872.html

loret, yes the cold does affect me & others with als.

Merry Christmas & Happy new year to y'all.

[merciful]

I will check it out. Thanks for the good wishes!

take care
merciful

[merciful]

WOW! I read your previous posting. This is so young to have this diagnoses. I would definately look into a second opinion. Maybe it's a mitochondrial condition or something which could be a little less severe. You must be beside yourself with worry.

Take care

[Skycaptain1618]

Hi all. I'm a 20 year old female and have been experiencing fasciculations for about 3 1/2 months. There were a few other symptoms (tingling,stuttering, buzzing), but they only lasted a couple of days. I haven't recieved a diagnosis from my neurologist yet, but I was wondering about possible causes. My mother had MS, and has since passed away, so that's been my first concern.....but from what I've read, it's probably not the case. However, I did have epiplepsy as a child; When my present symptoms began, I experienced phantom smells, sounds, and sensations, which I know can be a result of epilepsy. Could epilepsy be the cause of my fasciculations and tremors? Also, there was some drug/alcohol use in my past....could my symptoms have resulted from minor brain damage? Forgive me...I'm a worry wart...I'd appreciate any help I can get.

[dalfoot]

I am currently going through a simalar experience now. I have had muscle twitches all over for about six weeks. This has been accompanied by sorness. I am seeing a top Neuro in New York who says he is not worried about me after seeing me for an office examination. However he is going to give me an EMG to be sure. He said I have BFS but without weakness and good muscle tone I should be ok. I try to recognize that logically this occurred after over exercising and tremendous stress because of my Wife's heart surgery but I still manage to worry. Hopefully after the EMG it will put my mind at ease.

[childrenrtreasures]

My grandpa recently had an MRI done to "rule out" ALS. They were convinced that's what he had. The good news was that he doesn't have ALS but the bad news was that he had two degenerated discs in his neck and the vertebrae were pressing on his spinal cord.

They told him to avoid all but the slightest activity since even a minor fall could cause the spinal cord to be severed and result in paralysis. He had surgery yesterday and came home today. The surgery is considered successful but they said it may take a year for all of the symptoms to abate.

He had a variety of symptoms but the most obvious to everyone was that his legs "jumped" and twitched frequently. He had a great deal of weakness, tingling and pain also.

It might be wise to get an MRI and EMG to rule out anything obvious.

I have autoimmune thyroid disease and during my hyperthyroid episodes get back and leg spasms as well as muscle cramps and tremors.

Kelly

[dankmandingo]

I am a 27 yr old male from cleveland, Ohio. On june 15th, 2005 I started having fasciculations in my left thigh. Since then I have them all over my body. From head to toe, you name a spot, I have them there. I am concerned that it is ALS of course. My left ankle down to my foot just started getting tingly and numb last week. I went to the Cleveland Clinic today for my 3rd visit since June with the same answers. Benign fasciculations. My EMG and MRI were both normal. I also developed vibrations in my left arm and leg. I am scared amd confused. Im not sure how to examine myself properly to determine muscle weekness. I am so scared. I believe my doctors are wrong. Just trying to ease my mind. I know something is wrong, but Im not getting any answers. When I put pressure and bend my left leg it shakes badly. Also when I do pushups my shoulder area shakes. I dont know what any of this means. Im confused. If anyone can give me any insight on this you are all welcome to e-mail me at <<<<<<***@**** >>>>>>>
    
     Thanks and God Bless you all

[ED50]

A related discussion, Severe pain in arm, muscle waisting was started.