Worried about ALS !

[HELP !]

Hello. In September 2004 I began training for a marathon (42k) that I ran in April 2005. I am male 29 years old. In May I had fasciculation on my right knee during one whole day that stopped after this day. Iīve just known about the sympthons about ALS then I was very scared and went to a neurologist. He did a neuro exam and said me that was everything normal (reflexes, without weakness and atrophy). He said me that EMG it was unecessary but I persisted a lot and did one (four limbs) with the best EMGer in my city (in May). The results was 100% normal. Since then until today I have widespread fasciculations (sometimes in legs, arms, neck and throat) but they are not constant. In june I went in a specialized ALS neurologist, one of the best in Brazil, and after the neuro exam he said me everything is normal. He said me the fasciculations are benign. Since a month ago, I have few vagues pains in the body and falls my rigth hand asleep when I am sleeping but after moving it for a few seconds itīs back to normal. Yesterday I went to a neurologist again and he did it is 100% normal (reflexes, no weakness, no atrophy). Since the marathon in April (4 months) I donīt do any exercise and gained 14 kg. My weight today is 110 kg. I continue very scared and very very very anxious. Please, answer these questions:
1) What do you think about ?
2) The marathon could be a trigger to begin ALS ?
3) Is necessary repeat EMG even I did the first one in May ?(the doctors here says NO).
5) Why the vagues pains ?
6) If it isnīt ALS, what could be ?
Thanks a lot, sorry for my english.

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

I cannot give you a formal clinical diagnosis over the internet, but I can give you some informal thoughts

1) nothing in your post suggests to me that you have ALS

2) no

3) no

5) I cannot be specific on the pains, perhaps the most likely cause is musckuloskeletal rather than neurological - have this checked out first

6) fasciulations, particularly when widespread from the start, without weakness and wasting, are likely to be benign - normal people can have fasciculations in the setting of exercise, cold, certain medications, an overactive thyroid gland or as part of a benign fasciculation syndrome. Have your thyroid function checked but I would try to be less worried about ALS or other serious neurological disease unless you develop objective signs

Good luck

[HELP !]

Doctor, consider these informations too. The palm of my right hand isnīt equal the palm of my left hand. There is a bit hole near my thumb right. My neurologist said me it isnīt atrophy, it is normal. Also, sometimes I think I have excess of saliva.
7) How can I know if the hands have atrophy ?
8) The excess os saliva and the fascicualtion in the body could be Bulbar ALS onset ?
Thanks a lot, best regards.

[HELP !]

I am so scared that I've just done a new EMG/NCV (4 limbs) few hours ago. Everything is normal (no fibrillations, no positive waves, no cramps, no spasms, no signs of denervation...). Also normal sensory and motor studies. But the EMGer found rares fasciculations in muscles sampled. Is it normal ? Do I have stay worried with it ? Please, consider it in your answer. Thank you again !

[ejg3952]

You need to visit www.aboutbfs.com.  There are hundreds of folks who twitch that don't have ALS.

[que03]

Have your electrolytes been checked?  I too was having a lot of twitching.  I was running a lot and have had to cut back because of heaviness in legs/fatigue. With it being summer time and exercising plus a blood pressure medicine my lytes were off just enough that it was irritating my CNS.  Since I was changed on blood pressure meds, my lytes are normal and twitching almost gone.

[SherryDenice]

You have had your tests done - so please rest assure that you do NOT have ALS!  I know it's HARD!!!  

I have symptoms of what I fear is MS.  I have had tons of tests... seen numbers of doctors... they all assure me it's not MS!  So, I understand what you are feeling.  We still wonder!!!

I obsess over it sometimes.  It's called HEALTH ANXIETY!  

Get on Zoloft!  Why Zoloft?  Because it works wonders for me.  It controls OCD (obsessive compulsive disorder) which makes us obsess over this stuff AS WELL AS helps w/ anxiety that is probably cause your twitches!

Please give it a try!

You will be fine!

Sherry

[rocketsurgeon]

Quit reading about ALS on the internet, you'll feel better!

[HELP !]

I havenīt been checked my electrolytes yet. I will talk with my neurologist about it. Have you done any EMG ? Thanks a lot !

[HELP !]

Yes, it is very hard !

I have already gone in 2 neurologists (6 times in 3 months), one of them very specialized in ALS, they said me that my clinical exams are 100% normal. The 2 EMG/NCV were normal (the last one that I did yesterady picked up rare fasciculations in the muscles samples).

BUT, I continue so scared !

My fear is the fasciculations are the ALS onset. Is it possible ?

My life is very calm. My anxiety is just because my thoughts in this disease. I stay my whole day thinking about it.

Thank you for your comment ! All the best for you !

[Beebarbiedoll]

I have had some similiar problems as you have and I also know of a person that had the desease.  The symptoms we have are not symptoms of ALS. The problem with the nervous system is that alot of symtoms could be any of a number of things that mimic other deseases/illnesses and sometimes they can just be symptoms with no known cause and then eventually just go away over time. Your symptoms would be different than the ones you have, from everything I have known about ALS. I have been through extentive testing and everything comes up negative, thank God. Stress can make things much worse and symptoms can be exagerated by it, so, try to put them out of your mind, think that someday they may just go away as quickly as they came on and be thankful that nothing has been found.  That really is a good sign.

[HELP !]

Beebarbiedoll, thanks for your comments. I agree with everything you said. But, itīs hard to put them out of my mind. I try a lot but sometimes I think it and get scared ! Yesterday I went to a neurologist...he said me I am 100% OK ! Last thursday I did my second EMG (first one was 100% normal). It was normal too, just rare fasciculations (no fibrillations, no positive waves, no denervation...) ! Do you think is normal to have just some fasciculations and to be 100% healthy ? Regards !

[Beebarbiedoll]

Hello again.  YES, I definately think it is 100% possible to have the fasiculations without haveing anything be wrong.  I have been having them in my arms and legs (especially legs)for 15 years now. I had muscle biopsy's in the past and if those come out normal, there is nothing wrong. I think I have had more tests than a lot of people who are actually very ill. Everything has always come out well. I feel awful a good part of the time and I have nerve pain from my hair to my feet but nothing comes up on any tests. That is why I have decided to just step back, look at the facts and test results, and just be grateful that nothing bad or negative has ever shown up. It may have everything to do with my fusion, which the doctors say it
doesn't, but I may never know that for sure. I guess like everybody else, I will just have to wait it out and pray that it just goes away, as quick as it came on.  Hang in there.  I am betting that one day when you least expect it, your symtoms will be gone.  The human body is very complex and the doctors can't always have the answers. You will be fine!

[scared§confused]

Hi,

I am 21 years old. And, so confused! Yes, I do SMOKE and Drink Soda but that has been my tradition and I'm always on the go, so I'm NOT LAZY....Only drink Pepsi, sometimes water & smoke 2 packs a day but they say I am Healthy!!! So I gotta ask if I'm not doing anything different after 7 years...what is going on with me???

I had nerve problems years ago but never thought anything of it, then about 5 months ago. I started getting worse OUT of NOWHERE! My hands will start shaking for no reason, no matter what position. I know it's not from being scared, soda..etc. You just know your type of shakes. But, I use to be so tired for no reason...but I rarely get that now. Use to have horrible migranes EVERYDAY but that just disappered out of nowhere! Rarely get them now. I don't get it...where do they go???? Why just stop out of nowhere, when I have changed anything about me??? Don't get me wrong I am GREATFUL!!!!!!!!!!
But, My right hand gets very weak, at times can bearly make a fist and Most would say I am Strong Girl but when I have an episode...people are shocked to see me, not be able to start up my truck!!! My right leg is very weak as well, sometimes I feel like I should just go get crutches so I can walk...it has also spread to left hand as well! Sometimes I get numbness in my fingers and hands. But, the WEAKNESS...Tears, I Just CAN'T GET OVER THAT!!!!! WEAKNESS!!!!! I can deal with the numbness if I have too but the WEAKNESS, GETTING WEAKER that I CAN NOT~!!!!
Sometimes it's PAINFUL AS WELL!!!
I have memory loss & loss of balance....I am sure I am forgetting some more symptoms! Oh, My tounge went numb the other night and I couldn't feel me drinking my drink, it was the first half of my tounge.

I just had a friend who passed away a year ago from ALS. So, I know what it does and I know the symptoms. So, I'm thinking it's not a ALS but it does come across my mind a lot. Can You PLEASE GIVE ME SOME EASE ON THIS ONE........maybe you could point me in another direction???? I don't know, I am CONFUSED and SCARED!!! And, so isn't my FAMILY!! But, I do know I am getting worse and not better and farely fast.........My Neuro doesn't know what is wrong with me...he says I could do back surgery for my leg because I have a hurneated disc and thinks that is what is causeing my leg problems!! But, didn't know what else was wrong with me and didn't know if it would get worse. He said he just wanted to consintrate on my leg and back! But, HELLO, THESE ARE MY ARMS, I can BEARLY HOLD A CUP AT TIMES...COME ON, DOESN'T THAT SEEM IMPORTANT!!!!!!!!!! Sorry, just frustrated!
Thank You very much for you Time~~~
Sincerely, Scared and Confused

[Beebarbiedoll]

I just read your note and I can just imagine how scared you are. I started having neurological symptoms out of nowhere, 5 weeks ago.  I have just started having all the neurological tests and haven't gotten any answer yet. I am 48 but a young 48 year old woman so I am worried also. Get all the testing done and try not to worry.  I know it is easier said than done because I have my moments to, but try not to dwell on this until you have more answers.

[ramonaj]

I have had fasciculations for ten years.  They are not painful, and do not seem to be related to any other medical conditions, although I am currently being worked up for possible MS, due to other neuro symptoms.  ALS is a fast moving disease.  The progression occurs quickly and is dramatic.  

It is not necessary to have multiple EMG's, that close together.  

There is much information on Benign Fasciculation Syndrome on the internet.  Check into that and try to not worry about ALS unless you start having many more symptoms all of a sudden.

[saras_daughter]

my Mother has ALS bulbar onset, and is suffering with this disease.

Friend let me tell you the advice the others have given you is correct.

I know that my Mother would tell you that you should try to enjoy your life, and forget about these constant worries.

If it is ALS, it shows up WITHOUT A DOUBT. Sure there are times when you look back & go...huuum, I wonder if that is what was wrong then? But it is unmistakeable!

My Mother had a spinal 'tap' and muscle bio. and they found it right away. PTL (praise the Lord) and she has steadily gotten worse at a fast rate (seems to me)....

[Jon Soderlund]

I have been under alot of stress lately about this. I do mortgage home loans at home, and decided to work a self employed job, instead of the daily grind downtown. Now about 4 weeks ago I started to get very fatigued and a little vertigo. But I already have vertigo due to a slight eustacian tube ear problem I've had for years. But the fatigue and the weight loss started to worry me a bit. So I got some blood work done just to make sure. And everything was normal except for a 7.1 reading on my TSH test, which is a Thyroid reading. But what's puzzling me is the reading of this type is hypothyroid making you gain weight, not lose it. I do get twitches all over, and I'm stressing bigtime over it. I get tremors from time to time, and my heart rate jumps sometimes, and have lost 25 pounds since last April. I can still swallow, and my speech isn't slurred, nor do i have any leg or hand numbness/ or weakness. But the weight loss is very scary. I've never lost that much before. I don't suggest this line of work for everybody as it's made me extremely stressed and worried. My Doc has ruled out MS or ALS for the time being, but I still am concerned cause I've been depressed and have had a significant amount of anxiety over it. Now my Sciatica is really bothering me cause it's adding to the other problems too. Any suggestions..? as this forum is new to me and reading this stuff just overwhelms people sometimes, THANX ALOT

[plv]

YOUR DIET SOUNDS LIKE YOU SHOULD STUDY UP ON MSG AND ASPARTAME...............STOP THE SMOKING TOO..........YOUR BODY IS YOUR TEMPLE BEWARE OF WHAT YOU CONSUME...........EVERYTHING YOU EAT  OR CONSUME  HAS A TOXIN ,,,,,,,,,,,,,,,, DON'T CONSUME TOOO MUCH OF ANY ONE THING IN A SINGLE DAY

[KHP]

Hello:

Just curious about early symptoms.  My mother and her sister both died of familial ALS.  Seems my maternal grandparents were decended from siblings of our original Mennonite ancestor 6 generations back.

I am 50, male and in good shape.  I lift weights and teach Aikido althought my job is rather sedentary.  In the morning I have some stiffness in my legs and hands and feel that my strength is not all that it should be.  In the gym I don't have any problem pushing the same amount of weight I have for years and I do 10 minutes of stairs for warm up.  I don't experience any stiffness during the day, I do computer work so I type alot and have not experienced any loss of dexterity in my hands, just occassional stiffness.
Does this sound like I'm just getting old, or should I get checked out?

PS I donated genetic material to the Harvard Med School for a project they were doing on familial ALS

[plv]

get your testosterone level checked and all other hormones. your testosterone sounds like mine when i discovered it was a lot lower  and going down. I raised it 30% with just ONE  herb that they have used for centuries in EUROPE