your 1st symptoms?

[AHands]

I'd like to pose a question:

What where the first symptoms dx'ed PALS had that sent you to a doctor?

my answer:
The "ALS symptom" that sent me to the Dr was visible atrophy in the hand--I called the doc and left a message that my muscles in the hand appeared to have dissolved. If I'd had fascics prior to that, I didn't pay them much notice. Looking back, I recall two things in the couple years leading up to the dissolving/wasting:
1. scars from minor cuts seemed to take forever to heal
2. knuckles on the hands seemed to "lock up" in the closed fist position
but I didn't feel either warranted a doctor visit.
I'm 44 years old now, and I don't think I saw a Dr between leaving my parent's home at 18 and turning 40.

[Akka]

Hi,
Do you mean that your muscles get atrophied without you to feel anything? like needles, thumbness, burnings in flesh, hot sensations? Just like that you realised that they are gone?
I am asking that bcs I have, since a year now, a lot of very weared sensations in my hands at night, that wake me up, like needles, burnings, I wake up with my hands benumbed, like suffering inside from something. I fact it is like a torture every night. Also they are like dried and my skin is like paper, even of I use tons of handcream. I will go to have a muscular biopsia next week, bcs I also feel them weak, and see what it sais. I also have a lot of other annoying manifestations, like cold sensation, trembling, shiver,
Of course, I have been to neurologists and they said it is not als, but were unable to tell me what it is very clearly...

[AHands]

yes--muscle just gone. starting with the thumb in my case, then pretty quickly the arm became emaciated up to just below the elbow. the hand and arm looked like a starvation victim, but elbow to shoulder wasn't affected so much. then the feet and other arm, but not as markedly. fasciculations later, but if they were there before, i did not notice. little to no pain, no numbness, just fatigue and a bit of dull ache. no skin problems.

[ZenArcher]

I initially lost dexterity in my left hand. I couldn't thread a nut onto a bolt or things like that but I didn't go to a doctor at that point because I figured it was a pinched nerve or some such. About a year and a half later I was at a meeting and I had problems holding the plate during the buffet lunch. At that point I scheduled an appointment with my GP who noticed atrophy in the thenar muscle and said it could be ALS. I had my first neuro appointment a month later and an EMG and he said it was a motor neuron disease. A month after that I went to the ALS clinic and got the second ALS diagnosis.

So to answer the question I would say the loss of dexterity got my attention but the loss of strength is what sent me to the doc. I have never noticed fasciculations although my wife says she has seen them in my back. Prior to the diagnosis and even now despite the obvious I am quite healthy. I was diagnosed at 38 and I can't wait to see the look on their faces when I walk into clinic at 50 :)

[Akka]

AHand, do you mean it happened over night? The muscle dissapeared overnight?So sudden?

[westjlittle]

My first symptoms, that sent me to the doctor, were cramping in my legs then slurred speech. I found that my speech was slurred after talking all day at a conference. Someone actually thought I was drunk. I had had nothing to drink.

At the first neurologist appointment, we discovered that I could not move my foot up and down. I also could not stand on my tippy-toes.

The normal progression of tests led to ALS clinic in Denver and ALS diagnosis.

In hindsight now, I had seen a gradual decline in my physical performance. I had been lifting weights and tracking my mile running times. I had noted that my leg press weight had dropped from 420lb to 350lb over six months. My mile running time had dropped from 7 minutes to 11 minutes over a years time. I thought I was slacking off but really it was the ALS.

I should also note that one year earlier than that I was having trouble skiing on more difficult terrain.

You can check out my progress on PLM.

Jim

[AHands]

AHand, do you mean it happened over night? The muscle dissapeared overnight?So sudden?

well, i noticed it suddenly.
i had one computer at which my hands would quickly tire. i thought something muss be wrong with the ergonomics of the desk. one day i looked down and noticed the big fleshy part of the left palm at the base of the thumb was just gone--wasted away--thats when i went to the doctor. march 2005.

[vmd]

It sounds like it may be necessary to distinguish between the symptoms that led us to the doctor and those that we recall in hindsight after we became concerned about ALS. In my case, I noticed my right arm was no longer able to lift the same amount of weight as the left arm (this was troubling, since I am right handed). However, after I started to suspect ALS, I was very vigilant about any new symptoms and noticed other changes that were probably there before, but I had not noticed. For example, I can recall having a bout of fasciculations about 15 or so years ago. This was probably BFS, however. I also recall the feeling that I could not keep my arms above my head for relatively short periods of time because they quickly started to burn. I've had this experience for more than 10 years. For a couple of years or more, I have had the experience of awakening unexpectedly from a nap feelings as though I am choking. Before now, I would not have thought much about this, but now I see it as a bulbar issue. For 5 or more years I have periodic bouts of excessive phlegm in the back of my throat. I am having this occur again. Was this another early sign of bulbar issues? It's hard to know, but since I am also having choking episodes with saliva going down the larynx, perhaps this was an early signal.

[vmd]

Jim:

Those are pretty good leg presses, there! Do you still lift weights?

Jeff:

I'm pulling for you! But, don't be too eager to reach 50, take it from one who us getting close to 60!

[hopingforthebest]

My husband complained of bilateral arm weakness and neck weakeness. Never pain.
Then shoulders started to atrophy. Went to neurosurgeon thinking surgical problem and doctor thought ALS from the start. Sent to neurologist and so forth.

My husband dx is PMA, and legs not affected to date. Breathing problems just started as diaphram weakness. Just started on Bipap for sleeping. Breathing is getting to be a problem during the day, gets winded tired.

I am scared.

[kelly]

My husband has severe muscle cramps for years before diagnosis. The major thing that initiated visiting a neurologist was slurred speech. Balance next..and now arm and hand weekness.

[wright]

It seems that the initial symptoms of ALS are very, very subtle . . . almost to the point that they are not noticed at all. Is that basically true?
It is amazing to me to always hear that people finally notice a fairly major symptom (can't lift something fairly light, or can't stop on their tip-toes, or can't turn a key, etc.) but not notice the progression leading to it. Is it because it all happens so slowly initially (over probably a year's time) that it goes unnoticed until something more major occurs?
It also seems that once they are noticed . . . that is, more evident . . . that the symptoms of ALS simply accelerate. Is that also more or less how it works? I have heard over and over again that everyone is different, but there does seem to be a common theme with many PALS.
Thanks again for sharing your knowledge.

[vmd]

Part of the problem is that there are cardinal symptoms and secondary symptoms. I am aware of the primary symptoms, but coming on these boards has alerted me to the secondary symptoms that accompany ALS, but may not be necessary for a diagnosis. This also informs me of the real nature of some of my symptoms (as opposed to psychosomatic ones). For example, if I notice a symptom first and then check to see if PALS have similar secondary symptoms, then I know such symptoms are not likely psychosomatic.

[AHands]

now arm and hand weekness.
Weakness without visible atrophy?

[AHands]

It is amazing to me to always hear that people finally notice a fairly major symptom (can't lift something fairly light, or can't stop on their tip-toes, or can't turn a key, etc.) but not notice the progression leading to it.
Looking back there were signs for a couple years: tendency of knuckles to lock-up, sensitivity to sitting on hard surfaces, but I thought that was just what it was like to be over 40. Even now, I can't say for sure that it was ALS and not just normal aging. We only grow old once, and its not in a vacuum.

[kinma]

I was a waitress and it seemed like the plates were heavier. I made a drs appt the dr refered me to the nuero and just before the apt I noticed my left hand had no muscle left. The nuero immediately thought ALS. 6weeks for nuero appt then 2 weeks to dx
I'm 43
kris

[BethU]

Hi, Wright ... I don't think of not being able to turn a key or lift a kettle as a "major symptom," especially since I manage to do them all with a little ingenuity. I had no clue that I was getting weaker until I found that I could no longer do a few minor things like that.

What would be an interim sign that you would expect to see? I'm very curious about that. Since I have no sensations of weakness, what would you consider a red flag that would let me know that I'm losing strength in my hands? Would my knuckles turn purple? Would I grow hair on my palms? I just hate the thought that I'm not obsessing enough about my symptoms to meet this forum's standards of high anxiety.

Actually, as far as major and minor go, I consider losing the ability to speak to be a major symptom, not struggling to turn a key in a lock. And I consider losing lip seal, frequent drooling, my mouth drooping open and jaw hanging down, choking and aspirating liquids, respiratory failure requiring hospitalization and entubation, to be "major" symptoms.

This is just a crazy hunch, Wright, but I bet if you woke up tomorrow and discovered you couldn't speak coherently, and knew that you wouldn't ever be able to speak coherently again for the rest of your life, you might reevaluate what constitute "major" and "minor" symptoms. In my experience, losing speech and swallowing is a real impediment to daily life, no pun intended :-). I have yet to figure out a way to accomplish them by other means, as I can with keys and locks and kettles.

Since I'm still functioning ... driving, shopping, working in my studio, housekeeping, cooking, doing Pilates, yardwork, and caring for my very ill husband ... and the only thing that is really affecting my lifestyle is my loss of speech and swallowing, I just deal with minor problems as they occur. If I have trouble turning a key, I figure out some other way to do it. If I can't lift a kettle, I make it lighter. Duh. Just trying to stay alive and do what I have to do. What a dummy !!

Anyway, please give me a list of all the interim symptoms of impending weakness I have missed, and I'll schedule 15 minutes a day to look for them in the future, and pencil in another 5 minutes for intense worrying.

Hope that helps.

[Al]

Geez everybody's taking a turn at humor this week. Is it Halloween or election giddiness? You were punning in the end, right Beth?

AL.

[BethU]

Moi? Puns?

Every now and then, a girl's gotta do what a girl's gotta do...

[wright]

Beth

This thread is over 6 months old and was just resurrected. I posed that question when I was learning more about ALS (I was still relatively new to the forum).

At the time, it was puzzling to me when people suddenly realized they couldn't turn a key without realizing it prior to that realization. Make sense? :lol: That would actually be the loss of a lot of strength in the intrinsic hand muscles, which is why I "labeled" it as major. I have been an avid weight lifter for over two decades and I can detect even 1% changes in my strength, so that made the scenario even more puzzling to me.

I have come to learn that ALS is an insidious disease and from what I have read and been told (you have actually addressed it in a few of your posts), you simply don't "feel" weak until you realize you can't do something you used to be able to do. I think your words have helped a lot of people gauge what ALS weakness is, because many of the nervous people that come on here truly "feel" weak (weak in the knees type of feeling for example) as an initial symptom . . . but they can still function completely normally. That should actually be a comfort to them and hopefully it is.

Your words are of great comfort and knowledge.

Anyway, I hope this finds you well. Take care.

P.S. The Lakers have Bynum, so they don't need Shaq . . . AND . . . Kobe is the best player in basketball. I consider them the favorite to win it all this year.

[BethU]

Thanks, Wright, for your gracious reply. And also for what you contribute to all of us on the forum.

I should know by now to check the dates on messages.

You really can blame my sarcasm on my meds. I have only taken one lability pill instead of two for each of the last four days (trying to get them out of the blister packs, I punctured a few of the capsules, and the clinical trial people can't replace them because it's a double blind trial, and they don't know what dose I'm on), and being touchy and sarcastic is apparently what I do instead of laughing hysterically at the wrong times.

And I'm sure Kobe agrees with you. On the individual skill level, yes, you're right. Alas, basketball is a team sport. And, OK, Shaq is getting a little long in the tooth ... but I still miss the big guy. :-(