Desprate for help and answers

[Bully22]

I'm sure you get these questions way to often.
But I have know where else to turn.
I need help I have believed I have had this disease for
probably 2 yrs now. I had an emg done twice
the last one was feburary I had it done in every
part of my body even my tongue. The said everything
was normal and that I don't have ALS I have had brain
scan ct scan ect. Yet I get fasiculation everywhere even between
my thumb and finger my tongue and now my tongue
feels like it is vibrating all the time. I feel my right arm vibrating also.
I also get this chill type sensation in random part of my body I lift my son with one
hand just to check my strenth. I am so fear striken it is not funny. I just had my 3rd child and im not sure I will even be around for them. Please help me understand
I need to know the truth I'm tired of my husband not believing me
and doctors looking at me like I'm crazy. Please help

[Bully22]

I am just trying to understand. If I had an emg done especially on the tongue neck ect. It was was normal
8 months ago does that mean l can't have ALS.

[Blizna]

Why did you write "I get fasiculation everywhere even betweenmy thumb and finger " - this is very common place for twitching in healthy people. So thorough EMG would surely discover some abnormalities if it was ALS.
BTW, vibrating of tongue and even its cramps can be caused by tetania.

[Bully22]

I keep reading that even if you have a normal emg it can change. im scared. please I could use more answers

[SandraD]

Hi Bully,

I am sorry to hear that you are experiencing these problems and are gripped by fears of ALS. I, too, have had an 8 month or so history of muscle weakness and pain, some mild atrophy, twitching, urinary urgency, periodic balance problems, off and on again excess saliva, etc., and I too am worried that I have a serious neuro condition. The only thing I know for certain right now is that I have a vitamin D deficiency, for which I am being treated, and a brain MRI showed a few scattered lesions that one neuro said could "point to MS," but all other tests for that disease have been normal. I had a normal EMG in June and one neuro said no ALS at this time, while the other said "unlikely." they want to follow me at regular intervals, however, to see if anything has changed and I think the EMG will be repeated this winter. both neuros said they not cannot completely rule out a neuro condition, however, so I will continue to be followed.

anyway, I too, have an almost 3 year old. my greatest fear is that something is seriously wrong and that I won't be around to raise her. so I know how you feel about that.

however, some kind folks on here have shared some info that has put my mind at ease to some degree, although I am still worried. even with a clean EMG, the neurologists would be assessing other things during the exam to rule in or out a neuro condition such as ALS. do you have overly brisk reflexes? are you showing any abnormal neuro findings, such as Babinski or Hoffman's signs? do you show clinical weakness during the exam? you do not mention weakness at all-- this is a hallmark of ALS. twitching without weakness does not add up to ALS. did the neurologist lead you to believe there is any possibility of a neurological condition, as they did with me?

if not, I would try to put ALS out of your mind and get some treatment for anxiety and/or obsessive compulsive disorder, which can make one fixate on physical symptoms. everything I have read and heard says twitching without weakness is NOT ALS. there is a benign condition that can cause cramping and twitching (BFS or BFCS), but you do not even mention cramping or pain, only some sensory issues. you could be experiencing the symptoms of stress, a vitamin deficiency (D, perhaps), or any number of other things.

also, have you been seen by a neurologist specializing in ALS. These people would be the best to assess whether or not you have ALS. GOOD LUCK:

MDA/ALS CENTER AT METHODIST HOSPITAL NEUROLOGICAL INSTITUTE
(713) 441-1141
E-mail: sappel@tmhs.org
Stanley H. Appel, M.D., Director
The Methodist Hospital Neurological Institute
6501 Fannin Street
Houston, TX 77030

[trfogey]

If you are that concerned that you might have ALS, even in the face of overwhelming evidence that you don't have it, you should be conferring with qualified neurologists, not a bunch of strangers on the Internet. The anecdotal information you have picked up by reading here means nothing without competent medical advice to put it into proper perspective.

Being convinced of something in spite of overwhelming evidence that contradicts your conclusion is not a sign of healthy and rational thinking processes. If you had had ALS all this time, you would have noticed more symptoms than just fasciculations and chills. The fact that those symptoms have not yet occurred lends credence to what the doctors have been trying to tell you -- you don't have ALS.

Fasciculations and chills are symptoms of many other diseases. Why are you so convinced that you have ALS? Are there other symptoms you haven't mentioned, or is there a family history of ALS?

[Bully22]

I have tigling crawly feelings in my legs mostly the right I do ha 2 bulging disc.
Buzzing sansation in my right arm. My tongue twiches and
has been feeling like it's constantly vibrating. I don't have problems speaking
or swallowing. I'm not sure about muscle weakness
somtimes I feel like I do in my arm and legs.
My neuro Is neuromuscular specialist. He preformed the
emg himself. But this was 9 months ago. And my tougue was not vibrating the.
I'm not looking a diagnoses here I just want to know if this sounds like anything.

Thank you

[Bully22]

My husband keeps saying you don't have
there is a better chance of getting by a car.
Well what about the people that do I'm not
invinsible no one is. I just need some answers
and waiting weeks for an apt. Is tourture.

[BethU]

It sounds like "something," but nothing like ALS. These symptoms point AWAY from ALS.

If you have just had a baby, please check with your doctor about other possible things that could be going on. If you are this frightened, you need help ASAP. You have too much on your plate with a new baby and other children to not get help.

See your regular doctor and tell him your state of mind, and the symptoms you are experiencing. Write them down beforehand so you don't forget. Make sure he/she understands how frightened, anxious and obsessed you are. I think your fears need to be addressed before doctors can begin to investigate these symptoms.

If you must wait weeks for a doctor's appointment, is there anyone else you can talk to? Perhaps a pastor, or an older relative or a social worker or counselor?

Good luck, dear. Please get help.

[ktmj]

Interesting username Bully. I've got a cow named Bully - thought it was a bull when it was born - turned out it was a heifer. Not implying your a bull, or heifer. OK I'll stop - first rule when you are digging yourself a hole is to throw away the shovel...

My story...

I have had muscle twitches since 1989. I remember the night they started and they have not stopped since.

In 2003 I started having very mild symptoms of something else going on. I suspected neuromuscular and had 3 EMG's that year. Nothing. Something has been progressing very slowly but I am still highly functional. An EMG September of last year, and one in February this year. Nothing. Visit to neuro in September for follow-up and clinical exam. Nothing. I know the wait can be "torture", but it is only torture you put yourself through.

We're all here to help, but you know we can't diagnose you. Try to relax and get your focus off ALS. It's tough when your body is sending you the signals that something is different than it used to be. Believe me I fight that battle every day, but I am blessed beyond belief with good things to focus on.

Best wishes.

[Bully22]

The neuro actually called me they had a cancelations
for tomorrow and I don't no weather be happy
or forgive have diarrhea. I don't think I have ever
Benny so scared. You are all such wonderful caring people
and your post mean more then you know.

[Zaphoon]

Fantastic! The neuro called you and now you will probably get closer to some answers. I have only one thing to say, believe what he tells you. It makes life so much easier.

Zaphoon

[SandraD]

Great news, bully22. I am glad that you will soon get some answers.

Sandra

[ktmj]

And... you didn't get mad at my Bully story.

Good luck and tell us what you find out!

[NikkiB]

Hi! I like many others have had symptoms and Dr.Google has now terrifed me. I am a 31yr old mom of 3,andhave found in the past few months Ihave been obbssesed with the idea of possiably having ALS. I didn't even know the symptom of feeling like you have a lump in your throat until a few minutes ago,and I have had that one for mts. I went to my doc for that and she said it was probably scar tissue from my thyroid surgery,now I'm worried because for about two mts. off and on I have had a weakness and pains in my legs and arm more so on my left side. My back has recently began to hurt to and I hold my 2 yr. old on that side so I guess I'm hoping its that,but I can't tell if I have made these crawly feelings with my mind or if there really happening,now my tounge feels like it has swelled but I can talk fine. Please help me,my insurance has canceled me and I can not get a new plan because I have a thyroid condition. I appreciate your answers.