Join Date: Feb 2004
als? please help
I am looking for people with ALS who can help me with my symptoms, I am so scared, and from what I read on this board & the internet in general, my symptoms point here definately, all of my symptoms are characteristic of this terrible disease, However some of the very beginning signs are not, please hear me out because I am not sure about a couple of things.
I am a 30 year old female. My symptoms started about 3 months ago.. it started with my legs falling asleep while sitting, (which is something that always happens for the past few years) From what I read, pins & needles is not a symptom (true or false?), but wait... I would stand up & it would go away. Then it started while I am active too, then went into my arms! I would wake up with my limbs feeling like there was sand in them (or asleep but a little different), my hands are very stiff, and I can't do simple things right like putting the cap on & off a razor, or cut my food normally with a knife & fork. my right ankle felt it the most, when I drive my car, my foot just does not want to apply pressure to the brake, an action normally not thought about has actually become an effort. The weakness is most in my left hand, my fingers are very stiff & not limber I guess you would say, I can move them & bend them and all, but it is not effortless (understand?) then it started up my arm, I actually went to the ER 1 day because I had this terrible muscle tightening feeling that went from my armpit down to my elbow, the pulling pain was awful... now I heard there is no pain with ALS, but this was a muscle type pain. My hands have worsend in the sence now when I hold my pocketbook, which is heavy, my arms are instantly tired & my hands/fingers shake, like the nerves are shot, this was only in my left hand, but the past week in my right hand too. The muscles in my legs are very sore, and I barely have muscle but what ever is there is sore, back of thighs & calfs. My Right ankle is the worst, but starting to get it in my left ankle too. I can walk on my heels & toes, but again, it feels strange, it is not effortless. My feet still get pins & needles when I sit, but that is old news that goes back a couple of years & don't know if 1 has to do with the other. Just typing is difficult for my hands & my arms, I want to just keep my arms at my sides because the don't have that tired feeling when I do nothing. 2 weeks ago another symptom started, the symptom that brought me here... The muscle Twitching, at first it was not so much, but now it is pretty much constant, I get them ALL OVER now, but it is mostly in my feet (a weird place i never in my life had it) in my legs, arms, hands & my face/lip. But I have them other places too, like my rear end, groin, stomach, etc. A minute pretty much does not pass without one, and they are all day & all night too. So This muscle weakness, mixed with the bumb use of my arms/fingers & legs, and the Twitching leads me to ALS. I am normally a thin girl, but I have lost more weight with no apparent cause because I have not changed my eating habits. I went from 105 to 95 in a few months, and I look anorexic from the waist up, my arms look like spaghetti, and I am now thinking the loss of weight is due to muscle atrophy? My arms definatley don't look right.
There are a couple of other things I want to mention too, I get this weird feeling in my face, right side, goes from ear to mouth, kind of like a numb feeling, but I still feel a scratch or hot & cold, I also get this in right thumb. I have had joint pain, that was an earlier symptom, maybe it is muscular, but do you have muscles in your fingers or elbows? My elbows tend to be very sore, I can't lean on them for to long. I also HAD it in the back of my legs, behind knees.
I am now getting this pins & needle form of electric shocks, I get it in my hands & fingers, my legs & feet, and my face & torso. What that is I don't know, but I want to tell all to see if anyone else may of had this too.
I have stomach pain badly sometimes, but no problems using the bathroom. I would get very nauses for longs periods of time, but not throw up. I still have this problem.
OK, now here is a list of the Doctors I have been to and all the blood work done...
I had a CBC - all was normal
Tested for Lupus and all that goes with it - Normal
only 1 test came back slightly high and that was my RA factor (rheumatoid arthritis)
would this test positive in people with ALS??
the normal range was 1-14 and mine came back 19
This brought me to the Rheumatologist, who retested and it came back a bit higher as 24
He also did a bunch of blood work which came back normal other than the RA
my B12 was normal too.
He was thinking I maybe had Sjogrens or something, but I tested negative, he didn't think I had rheumatoid arthritis, I guess during the physical exam he did not find the criteria for it.
Because I am also getting very stressed out by all these awful & constantly worsening symptoms, I am starting to have anxeity too, I have felt headachey at times, dizzy & feeling like I am not getting enough air, I always have to take deep breaths. And now I am noticing I feel the need to swallow all the time, like to much saliva is in my mouth.
I went to a Neurologist who sent me for
MRI on my brain - came back normal
MRI on cervical spine - normal except for a herniated disc in my neck
he said that could cause pins & needles in the hands, but nothing in the legs.
I guess from there MS was ruled out and he felt no need to do a spinal tap.
Tomorrow I am having the EMG upper & lower.
Of this I am scared to death... I understand this is the test that would show ALS, and I feel I already know the answer.
Are the results instant? will I know right away?
Please anyone with info please let me know your thoughts of my situation, or if this could possibly be anything else.
The weakness / twitches / weight loss & lack of muscle has me looking nowhere else.