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Amyotrophic Lateral Sclerosis (ALS) Message Board

als? please help

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Old 03-01-2004, 09:39 AM   #1
Join Date: Feb 2004
Posts: 2
lillylil HB User
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...
Primary doctor
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.

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Old 03-02-2004, 07:23 AM   #2
Junior Member
Join Date: Jul 2003
Location: TEXAS
Posts: 25
Re: als? please help

LilliLil, Hi, sorry to hear about your worries of ALS symtoms. I was diagnosed last year with a type of ALS. I am still not sure where it is headed, and only time will tell. I believe you are going in the right direction to discover your diagnosis. I think the EMG will be one of the main test factors that will enfluence the diagnosis. Remember, ALS symptoms are different for each individual, and may begin in different areas of the body, they might be severe for one person and less for the other.
I think a positive attitude is a must for those that have or think they have this disease. There are no test to conclude ALS, but eliminate other diseases. I had 5 cervical fusions over a course of 5 years, and never once had tingling or numbness symptoms, which is not to say it might be possible that your arm symtoms could be attributed to it. Stress can definately bring on many neurlogical symptoms too. keep your faith, and continue your test.
I will pray for you, and wish you well.

Old 03-05-2004, 09:19 PM   #3
Senior Member
Join Date: Dec 2003
Location: palm beach gardens fla
Posts: 135
wastefulltick HB User
Re: als? please help

hi lililu
i also have a lot of the symtoms you describe except for i have a buring sensation in my right toe sometimes when i wake up my hands are curled up together and hurt bad and numb and tingling i have ddd in c2,3,4,5 and pinched nerve in c67 that was verified by mri and emg had series of 3 esi injections in the c67 to no avail had chiro and pt still hurting bad been to 3 neuros all say different things 1 no surgery 2 says fusion c67 and check out other disc while hes there other says wait for bryan disc to be approved currently on pain management and takeing 15 mg roxicodone 4 x a day with 5 mg percocet as needed for breakthru pain i still think there is still something else going on i ache all over joints hurt tired all the time always stiff and misrable maybe cfids or fibro or als lupus who knows all the drs blow me off saying it related to neck or meds but it was going on 4 years before i even took meds sorry for the long post i just wanted you to let me know if you find out anything about your symptoms and i will let you know if i find out anything i got a appt with new neuro for next week will keep you posted also welcome to the boards i usally post on pain management but do surf the boards looking for answer to all that pains me
ill say a prayer for you
have a pain free day
chronic pain sufferer from pinched nerve in c67,disc protusions in c2,c3,c4 osteophytes in c3,c4

Old 03-06-2004, 06:32 AM   #4
Join Date: Mar 2004
Posts: 8
CABLE720 HB User
Smile Re: als? please help

Hello - first time in this board so I'm a newcomer. I have alot of what you describe also. My symtoms started 5 years ago. I was walking across a parking lot and my right toe dragged. I thought that was strange. Then it become to drag more often. I too had disk fusion in my neck on C5. After that my legs started shaking. I've had many test done for MS - but the spinal taps are clear. I've been seen at the Mayo Clinic and they thought possible MS. It wasn't until last July that a doctor in Chicago diagnosed me with PLS. Primary Lateral Sclerosis
It is a degenerative upper motor neuron disease under the"MND Diseases umbrella", like ALS, it does have some lower motor neuron problem signals that can be detected on an EMG test, but it does not mean that it will change to ALS. If the findings show lower motor neuron involvement, it does not make a diagnosis of ALS, it is a combination of these and upper motor neuron findings.
PLS strikes the voluntary muscles, and usually begins in the legs. Initial symptoms may include difficulty with balance, weakness and stiffness in the legs, muscle spasms, and dragging the toes while walking. Occasionally PLS may begin in the tongue or hands. In the tongue, the initial symptom is slurring of words. In the hands symptoms include weakness and stiffness in the fingers, general clumsiness, and fatigue doing repetitive tasks with the fingers.

My speech has really gotten worse. I now walk with the aid of 2 canes and have no balance. I'm not on any medicine at this time. January of this year - I had to retire from work. I was hurting myself falling at work. It was very hard to give up a get career that I enjoyed. I now attend speech and physical therapy.

The only thing that helps me get through the days is having a very postive attitude. God gave me this disease for a lesson. I'm not sure what the lesson is at this time - but I know that someone will be a better and stronger person because of ME.

I will pray for you.


Old 05-27-2007, 11:59 PM   #5
Junior Member
Join Date: Jan 2007
Location: Middle of the USA
Posts: 34
jeff001 HB User
Re: als? please help

Hi, I have all the same symptoms, or rather did until treatment. I was wondering about an update?


Old 05-28-2007, 03:38 AM   #6
Join Date: Jun 2006
Location: Brisbane
Posts: 124
AussieTam HB User
Re: als? please help

Very similar symptoms here too ... my pins & needles, though, I've figured out to be from when I manage to trap my nerves - for some reason, because I'm so thin in the hands and feets, I seem to be able to do this really easily lol.

If you have any updates, please let us know! Thinking of you.

Sara - how did you get diagnosed with PLS? My EMG was negative but SOMETHING has to be causing the twitches and weakness in my legs ...

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