More symptoms occuring, can ALS progress this fast?

[BarryG]

Please stop saying that you have bulbar onset symptoms because you don't. The feeling that your throat is tightening is NOT bulbar onset, speech and swallowing difficulty IS bulbar onset.

 

[daddypix]

hey i know exactly how you feel.........an elevated wbc could indicate an infection of some kind...maybe not als........you have listed a wide range of symptoms and i dont think from what i ve read here that als presents itself that way...normally it only shows up as weakness,muscle wasting,balance issues,coordination probelms,cramps and twitching..which unfortunately is what im going through..except the balance. one im going to pick my emg up wed...and like you im scared to death....not sure how im gonna cope..but the stress is ruining my life and i need to findout so i can make plans to deal with this horrible affliction...you know it strikes mre men then women.....your probably ok.......best of luck..

 

[trfogey]

No problems eating, drinking or anything that I have noticed but the throat closing feeling is scary. If this is ALS it seems to be progressing so fast and now with the bulbar symptom in addition to the leg issues, I don't get it.. I thought ALS was supposed to begin in one region and slowly spread.. Yet it's like I have bulbar onset AND limb onset, with all my als symptoms coming on within weeks... I

What you have described here is not symptoms associated in any way with ALS. Anxiety, yes. Any one of many possible obstructive disorders in your throat -- swollen tonsils, enlarged thyroid, etc. -- yes. Neuromuscular weakness or spasticity -- no.

Well it's not ALS and you have now entered the very common phase of the over anxious, the " feeling of your throat closing" . Always seems to come along. It's just anxiety. ALS does not work that way. Things never improve, never on and off symptoms. Once the nerves denervate and muscle disappears there is no going back. You have no weakness anywhere, just a few cognitive issues. Why you have linked them with ALS I have no idea.

Well said and worth a repeat, Aly.

Please stop saying that you have bulbar onset symptoms because you don't. The feeling that your throat is tightening is NOT bulbar onset, speech and swallowing difficulty IS bulbar onset.

If you go back through her previous posts carefully, you can see that she doesn't have either atrophy or clonus, either, so limb onset is out as well. It's always much easier to claim to have the symptom than it is to actually live with it. You just get tripped up when you try to describe symptoms that you don't have.

 

[TedH5]

Wow this is some thread. I am not sure what brought you to this forum or why you fear that you have ALS. Your symptomns do not suggest or remotely point to ALS. The more people try and convince you of that the worse your "symptomns" seem to get and the more you try and convince us that you do have it. The mind is a very powerful tool. You need to learn to control your irrational fears.

Allow the Doctors to run their tests and figure what is going on with you. Stay off the internet, stop trying to diagnose yourself, control your anxiety and I am sure some of your "symptomns" will begin to fade.

I wish you much luck and good health!

 

[terrif1ed]

Thank you guys for your continuous support and advice. I know anxiety is a strong underrated entity that can cause a wide range of physical issues - and I know what it can do to someone mentally. I'm not really refuting that, nor am I saying it is definitely bulbar ALS although there is a fine line between self induced (subconscious) symptoms and then symptoms that are infact occurring for another reason, then just being thrown into the general "anxiety" bin. Of course when dealing with a situation like this it is easy to get ahead of yourself and jump to conclusions.. It's easy to fear the worst; but that's not to say it's all irrational and unjustified. When I told my husband what was going on with my throat he was like "you just started smoking again" - That's true, I didn't think of that, but maybe that's all it is - I really don't want to scare anyone with symptoms similar to mine if I can avoid it and I don't mean to diagnose myself prematurely or wrongly, I apologize for assuming, Like I said I'm just trying to prepare for the worst; whatever diagnosis that may be.

The reality is, if you had read, the atrophy IS there. Or if it isn't the clinical definition of "atrophy" what it is is my left calve is thicker and bulkier than my right. If the neuro had taken the time to assess me that thoroughly she would have easily seen the difference as it is kind of obvious. I will try to post pics later if you guys want...Actually, I definitely will. As for clonus, yeah I have no idea - The ankle test for it yielded nothing but I DO have the bouncing reaction when on my tip toes (although not painful or anything like what notme has) -- I don't think clonus is associated with pain, so that might not be what it is in her case.

Anyway I want to once again thank everyone on here for your continuous support and opinions -- I will update with pics of the calves, and the eventually my diagnosis once it is received. (I really hate when members in limbo never seem to return to confirm or refute their initial suspicions) And so I guarantee whatever this ends up being, I will come back regardless to report it. If that helps one person going through similar symptoms than it's worth it.

 

[notme]

Actually, the jerks aren't what's painful--unless they don't stop--it's the charley horses they always cause that is a daily thing -- and yes, for me, it's very painful and no, pain isn't a symptom of ALS either.

I've got a lot of issues going on, which is what makes it hard for doctors to diagnose.

 

[terrif1ed]

Pics below...

http://img825.imageshack.us/img825/5263/img00517201104232121.jpg

http://img269.imageshack.us/img269/5167/img00522201104232125.jpg

http://img683.imageshack.us/img683/3015/img00523201104232126.jpg

Please excuse my terribly pastey legs, It was a very long, cold, and cloudy winter So... what's the verdict?

 

[trfogey]

Please excuse my terribly pastey legs, It was a very long, cold, and cloudy winter So... what's the verdict?

The muscle in the left leg seems less defined than the one in the right leg, perhaps less toned, but it doesn't appear to be a significant difference. Sorry, but it's very difficult to tell from a picture and the apparent muscular definition is highly dependent on the angles of flexion of the ankle.

Having two similar body parts of different size is not atrophy. It is asymmetry. It's actually quite normal. It can be accentuated by heavy use -- think of the tennis players with one large muscular forearm and one "normal" forearm -- and it can also be caused by disuse -- as when an arm or leg is immobilized in a cast.

Atrophy is a process. It occurs when a body part is first one size, then becomes smaller over time. The atrophy that accompanies ALS is related to paralysis of the muscle. When the muscle is not used, the body attempts to reclaim/recycle the materials that make up the muscle in order to give the muscle a size appropriate to its workload. If a muscle is not working at all, it doesn't need much bulk. If it is doing a heavy workload, it requires more bulk.

 

[terrif1ed]

Well the smaller calf is on my non dominant side, although, I don't use that leg any less than my right or participate in any activities that would create the asymmetry; unless the asymmetry like you said could just be a normal finding. Obviously before all this I had never assessed my legs to this degree so there is no way of knowing for me if this is my normal. What is weird is that the right calve has been the one twitching more continuously, less so on my left.

 

[LornaDoone]

This is an amazing thread. I just dont get it. Most of your symptoms are not related to ALS. You have heard that several times. Yet you post pics of your calves. Do you want everybody to tell you that it must be ALS?

Ok.. it must be so.. You are right. You are clearly qualified to make this diagnosis despite a Dr's opinion.

As a side note: do muscles twitch that hard in ALS patients? I am a caregiver for 7 patients and have never seen this before. Lots I dont know yet though. And Notme repored leg jerks.. None of my patients had reported leg jerks before.

 

[notme]

As a side note: do muscles twitch that hard in ALS patients? I am a caregiver for 7 patients and have never seen this before. Lots I dont know yet though. And Notme repored leg jerks.. None of my patients had reported leg jerks before.

I'm going to be tickled to death if the spasms in my legs are something else, trust me. I was worried it might be UMN signs--spasms and cramps--and yes, sometimes they just move all on their own--almost always when I'm sitting. But, if I lie down, my legs will just suddenly jump all on their own--which I call a 'jerk'

I've worked wtih ALS patients (for many years, actually) and spasms and cramps were common--but I worked mostly with residents in a nursing home.

But--I have other areas that jerk on their own--my jaw also does it, too.

My leg 'jerks' are uncontrolled movements--my leg moves up and down from the knee and it's painful if it doesn't stop immediately--I'm sure, because it makes the muscle sore from the repeated non-stop movements.

If it was a once in a while thing--I wouldn't worry at all--but it's very frequent and worsening.

I have no atrophy in my legs at all--in fact, they look better than they have in 30 years--but I'm still falling, still tripping on nothing, and tearing the heck out of my toes on my left leg.

My post here was intended to help terrified--I have no ALS diagnosis--I was trying to explain that the movements my leg do are not at all 'light' I keep thinking energizer bunny movements. I really doubt I could move my legs that fast if I tried (which I won't, LOL)

At their worst, my daughter has to take my leg and straighten it--because I can't stop it.

If this isn't something PALS here don't experience, or didn't experience early--all the better for my potential prognosis.

I have a whole host of other medical issues going on--and have absolutely no idea what causes what at this point.

I know from experience and reading here that pain isn't a normal part of ALS either--and believe me, pain is a huge issue for me. But what is caused from whatever is happening, and what is residual disability from my stroke and what is caused from a lot of bad discs and ....well, you get the idea.

it gets hard to sort out what is what.

Anyway--my intent in posting in terrified's thread was to try and allay her fears of ALS

 

[giantfan]

Pics below...

http://img825.imageshack.us/img825/5263/img00517201104232121.jpg

http://img269.imageshack.us/img269/5167/img00522201104232125.jpg

http://img683.imageshack.us/img683/3015/img00523201104232126.jpg

Please excuse my terribly pastey legs, It was a very long, cold, and cloudy winter So... what's the verdict?

One point to note, your right leg has a bit more definition (just like mine - and I'm a lefty), but remember when driving your right leg is doing constant repetitive work which builds tone over muscle bulk.

For me, I'm having some issues with my right leg, but it has the most muscle tone lol. But it makes sense when you consider how many times it goes from gas to break, up and down over the pedals in a car. I do a lot of exercising, and if you want tone it's all about reps over weight. So when you repeatedly work a muscle group like that without a ton of weight, you'll get toning like that... IMHO.

 

[LornaDoone]

My post here was intended to help terrified--I have no ALS diagnosis--

Why do you say that you were diagnosed in April of 2011? You say in your blog. And in private message you say that you do. WOW.. What's up with some of you people?

Why do some people waste our time and the emotions and empathy of others? You totally hijack threads and expect to bring more attention to yourself.

If people, not just you, can't be honest and open, then you dont belong here. Clearly this is an open forum, but you are doing yourself or others no good.

 

[notme]

Why do you say that you were diagnosed in April of 2011? You say in your blog. And in private message you say that you do. WOW.. What's up with some of you people?

Why do some people waste our time and the emotions and empathy of others? You totally hijack threads and expect to bring more attention to yourself.

If people, not just you, can't be honest and open, then you dont belong here. Clearly this is an open forum, but you are doing yourself or others no good.

I wish the mods would bring the PMs here--I have NEVER said I was diagnosed--ANYWHERE. Not in PM, not here, not anywhere. I said I BELIEVE that this will be the ultimate diagnosis. So what? I'm not allowed to have a belief? The 4/2011 says EXACTLY what the neuro wrote in the letter to my insurance, my GP and to me. WORD for WORD, I believe. Why does that bother you so much?

My 'hijacking' threads is trying to ANSWER questions people ask here--is that not the POINT of this part of the forum? Why don't you put me on ignore and I'll do the same.

 

[pumpdoc]

Why does it bother us? Because you don't have a diagnoses of ALS yet, you don't have to have some one wipe you, bathe you, you can still walk eat normal foods, shall I continue?