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androgel1970

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I keep reading that and early symptom of ALS can be subtle . . . that is, being unable to button your shirt or not being able to open a jar or tripping over carpet, etc. To me, those are subtle at all. So does someone go from one day not being able to button your shirt, to the next day, not being able to button your shirt? I feel weak in all four of my limbs (more pronounced in the right arm and right leg), but I can still button my shirt fine, open jars and I'm not tripping. I fear I have ALS, but how can someone not notice they're getting weak before being unable to button their shirt, etc.? That just has me confused.
Another question: does ALS typically affect your hands and feet first and then move it's way up further in the limbs? Is that why people can't button shirts or trip as an early sign of ALS?
Thanks for taking the time to read my post.

Tony
 

CindyM

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Hi Tony. Your observations show how difficult a disease this is to pin down. First, the disease affects everyone differently. Now add to that that some folks might feel weakness for awhile and attribute it to working too much or stress or whatever until they finally notice they are losing skills. And some folks have such slow progression that it takes months or even years to get from one point to the next.

This is why I gave up trying to pin down these answers months ago. :-D
 

AHands

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I fear I have ALS

Having ALS sucks. Do not let fear cloud your judgement and make you focus excessively on ALS. There is no definitive test for ALS. You've got to look at all the other possibilities. Accept that ALS is one possible cause, and investigate others. Some diseases are more treatable if caught early, there's no worry about that with ALS, so keep looking at other possibilities.

how can someone not notice they're getting weak before being unable to button their shirt, etc.?

Maybe its because the muscle wasting is a result of nerve damage--the muscle doesn't just get weak, it gets weak as a result of not being innervated. A nerve cell dies, an adjacent nerve cell takes over, then it dies and we don't notice until we've lost all the cells in that nerve. At the same, when we're talking about small muscles we subconciously adapt--hold our spoon or pencil a little differently to compensate.

I felt my hands tiring quickly, but didn't feel a need to call my doctor until one day I looked down and saw that that big bulging muscle where the thumb joins the palm was gone on one hand. He sent me to a neurologist who eventually sent me to a PT who took measurements and it was only durring those measurements that I realized I could no longer bring my thumb inwards to touch my pinky.

does ALS typically affect your hands and feet first and then move it's way up further in the limbs?

Mine seemed to.
 

androgel1970

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Thanks for the reply, AHands. I am trying not to focus so much on ALS, but as I'm sure you know, that's difficult to do when you think there's even a slight chance you have such a disease. If someone told me my story, I wouldn't come-up with that diagnosis, but it's always difficult when you self-diagnose which always leads to the worst case scenario. There are certainly other logical explanations for my symptoms, especially given the circumstances, and just when I think I'm over it, I think of my son and how he would have to see daddy in that condition and the fears take over again.
So have you been definitively diagnosed? How are you doing?
 

androgel1970

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Hello Cindy
You mention that some people feel weakness: is that a symptom of ALS . . . or were you referring to limb weakness? All of limbs are weaker than they used to be. Again, the weakness started in my right arm . . . went to my left arm in a matter of 2 weeks, and then to both legs in a matter of matter of a day. The weakness isn't clinical weakness, but I know my body very well, and I'm weaker in all of my limbs. I'm still fully functional: my gait is fine, I can open jars, button my shirt, still type about 80 words/minute, etc. I know my story is atypical because the progression of weakness from one limb to the other was so fast, but again, the weakness isn't debilitating (I've only lost about 10% of my strength). I know it can be so many other things, but I think human nature always has us thinking about the worst case scenario.
Were you positively diagnosed? If so, are you progressing slowly or quickly? How are your spirits?
 

Tall John

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Ohioprof

You two sound exactly the same....read all his posts.
 

AHands

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I think of my son and how he would have to see daddy in that condition

Yes, think of your son & what you should do for him now, that you MAYBE won't be able to later. But don't let the fear conrol you--that won't be good for him.

So have you been definitively diagnosed? How are you doing?
Doing fine. As a matter of fact, I sent my family an email to let them know that i"m having a GREAT day today! Of course my left arm is still useless and my right hand is still atrophied, and my neck still feels weak and my throat is choked up, but somehow...my spirits are up, I guess.

Diagnosed...no...In November they put me on Riluzole and ordered more tests (blood, EMG/NCS & CaT...plus I got an LP). I go back on the 15th--one week from yesterday--to discuss results. They did blood tests for contagious stuff...if those tests were positive for anything contagious i'm going to be pissed that they sat on them for two months. As far as I'm concerned, its not ALS unless EVERYTHING else checks negative...and maybe not even then. That may sound like "denial", but some things (e.g. lyme) are hard to detect, and as long as theres no treatment for ALS, treat me for something else.
 

androgel1970

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To AHands

Make sure you let us know how your test results came out. Hang in there.
 

AHands

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Make sure you let us know how your test results came out. Hang in there.

Thanks. I only got home around 10pm last night.

bp was high, vital capacity (lungs) normal.

on the emg/ncs he says it looks like ALS.
but, the f-wave (echo from the spine) didn't show up, which i gather is not normally an indication of ALS, but then he went on to say that the f-wave often doesn't show up when there is severe muscle atrophy, so I'm confused--is "no f-wave" consistent with/expected for ALS or not?
I also don't recall if he saw lacking f-wave in a specific nerve or in general.

the cat scan (november) was neck & chest, to look for tumors that might cause als-like symptoms--none found.

the blood tests came back negative for lyme, syphilis, etc, but somebody dropped the ball on the HIV test. we drew seven more vials of blood to send off for HIV, GM1 (GM1 antibodies indicate MMN, but he says my hyperflexia makes MMN doubtful) and SOD1 (implicated in one form of the (rare) familial ALS). I don't know why GM1 wasn't checked in the first batch, but he says he is sending to Massachusetts General where he's seen them catch GM1 that other labs did not.

the (intern? resident?) spent a lot of time looking in my mouth. I thought, "uh-oh. he must see bulbar signs" but later he said no. i think maybe i was straining my jaw to open wide and created some suspicious movements that went away when i relaxed a bit.

the pt set me up with an rx for a neck brace (weak neck is major complaint, beside crippled hands) and the speech therapist got the technology guy to set me up with an appt on 31-jan to get setup with a morse-usb input device after i told them i wanted to pursue that. somebody else on the team went over what kind of arm exercises would be good--basically slide it back and forth on a able to use it without straining against gravity. maintaining my current level of bicycling should be good for lower body. another team member is sending me a referral letter, in case i need it, to get the akc to allow me a high-back chair (they've been kinda weird about chairs in the past, but they'll probably be reasonable for a medical need.)

the dr again discouraged me from taking "homeopathic" remedies. i did NOT point out that i am not currently taking the true homeopathic stuff-just a bunch of vitamins and supplements--i didn't feel that he would appreciate that distinction. he mentioned again clinical studies, and that i might not be eligible for them if i'm taking this stuff. i am certainly not convinced that the clinical studies are any more likely to be beneficial to me than this stuff, especially phase I and placebo-controlled studies.

i asked about my vision problem, but he thought it sounded unrelated. for now my diagnosed is "motor neuron disease".

the resident/intern guy retested my bp. dystolic was 115, down a bit from earlier. he and the dr became quite concerned and insisted i go to the emergency room. in ER it went down a bit more. I was there for several hours. my blood-sugar was 99 (very good). i normally bike at least two hours per day, but this was my third day in a row with no biking. the ER docs clearly were at least as surprised as i was that i was being sent to ER for bp that was high, but not emergency-high, and no symptoms. they lectured me a bit for going off my bp meds without consulting my dr and wrote me an rx for lisinopril. "you know, if you don't take care of it now, when you're sixty..." "uh, i appreciate the concern doc, but you know that clinic i that sent me here is the ALS clinic, right? i've kinda got, 'Other Priorities'..." my dystolic was down in the 90s by the time they discharged me (no treatment).

i filled the lisinopril.
 

CindyM

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for now my diagnosed is "motor neuron disease".

I am sorry to hear it, AH. I was hoping we would not have another PAL join us. How are you doing since you got the bad news? Cindy
 

AHands

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i'm ok--thanks.

i'm still not officially diagnosed'ed as ALS.

its been nearly three years since i was first told that i probably have ALS. I remember thinking the passing of each season was likely the last time i'd experience that season. it took me back to when i was a kid and the seasons seemed so far apart. in mid-lfe they're a blur, and then they slow down again and i'm grateful for the slowness. i think the good thing about a terminal illness is you get this time, unlike those who die in accidents.

i remember my first winter after being told i had ALS. visiting a friend, not mentioning my new predicament, but looking at their old, deaf dog, and thinkng, "hang in there fella--you'll outlive me!"

now here i am nearly thee years on, and i'm not about to give it up yet!
 

siuska

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At Hands

At Hands,
i am sorry to hear the diagnosis the doctor gave you, but i am so glad you can go out and bike ride- and that is wonderful...

i wish there was a chat line ALS/MND people could go to any time or the day or night when things start looking pretty creepy...and talk with others...i think there are so few cases of ALS and each person presents differently it's hard for neuros to sometimes figure out...where the heck is HOUSE?

speaking of creepy, i go in to the neuro for the EMG/NVC results which i know i flunked.
i may be posting after this appt.

another thing is i read that they are testing a new protien therapy that will be coming out soon...i will try and find that article...it's suppose to work better than the rizule (sp)
 

vmd

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sisuka:

Yes, good idea about the chat line.

Ahands:

I like your "not about to give up" philosophy. The fact that you can still bike is good, considering you have been at it for 3 years. I am only in my first year, but can probably go back and detect some physical limitations before that.
 
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