still the same

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boxer22

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Hello agian everyone, Everything is still pretty much the same with me. Twiching everywhere including my tongue, it hasnt got worst but it sure aint got any better. The twiching has been about the same for a year. I still have to clear my throat everyday, mulitple times because of the stuff that i just cant seem to ever get down, thats more annoying then anything! Still brisk, still have a tremor when trying to do something with my hands that requries a little bit of force. Any body else with these same issues? Any advice? Thanks you guys!
 

Sanders915

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Any weakness? or atrophy? if not would say you are doing ok, after the lenghth of time you would be much worse off, you can twitch anywhere, in any muscle, and brsik reflexes go with that often. How brisk were you reflexes? did you have jaw jerk and clonus, those things could be much more telling. Dont worry, just ask and see if we can ease your mind.
 

Lorie

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Sanders

I am not a Negative person, just knowledeable. My brother Tim had Twitches and Cramps for seven years before ALS was suspected. No Atrophy or weakness until right before DX. Due to slow progresssion. Dx in March of 05. Everybody has there own Journey. When the symptoms get bad enough a Neuro. Familiar with ALS can consider ALS or Rule it out or send you to a specialist. Sometimes it can take what seems like forever. I don't think I would be so quick to make that judgement. Just stay aware of any changes. See the Neuro. often. Unforunately there is not a quick way to get a Dx unless the symptoms or progression is just that bad.


Just a little info!

Lorie
 

wright

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Hello Lorie and all who will listen

The twitches and cramps your brother was feeling for that length of time probably had nothing to do with ALS (seven years of twitching is an awful long time to twitch before you get ALS). I keep seeing similar things said on here . . . and I think it scares people for no reason. It's as if PALS are completely immune to every ailment on the planet. That just simply isn't true. So if someone is seeking advice on here and giving symptoms that truly have nothing to do with the etiology of ALS, I think it's irresponsible to tell them that you know of a PAL that has such a symptom, but it truly has nothing to do with ALS. Example: if someone is on here and says they have blurred vision . . . or ringing of the ears . . . or headaches . . . or anything else that isn't a symptom of ALS, then they need to be told that. Don't reply by saying that you know of a PAL that has blurry vision, because it just doesn't have a thing to do with the disease. That is simply a PAL with blurry vision. End of story. I bet everyone that has gotten ALS watched television . . . or drove a car. Does that mean that watching television or driving a car causes ALS? Of course it doesn't.

Bottom line: you can't look back on things and assume that they all had something to do with the development of ALS or any other disease and you can't assume that just because a PAL has some unrelated symptom to ALS, that all of a sudden that symptom is now attributed to ALS.

Lorie, I also want you to know that I wasn't trying to be mean or negative to you (or anyone else on this forum) in this reply. There are a lot of scared people out there that think they might have ALS and chances are, they don't. We shouldn't feed their fears needlessly. This forum is amazing, as are the people on it (you included, Lorie). I myself don't know what I would have done without it.
 

Cornelia

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Thank you Wright, you took the words right out of my mouth. I think 7 years is a
long time to have twitching and cramping, before any other symptoms of ALS show
up, since ALS is mainly an illness of weakness. As far as I have read, weakness will
precede twitching, in the majority of cases, or at least go hand in hand. ALS is
rare, twitching before weakness is rarer still. Take heart Boxer 22, I think you
probably have BFS. Enjoy that cute baby of yours and don't be afraid. Cornelia
 

siuska

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twitcher

i twitch and cramp, but i have peripheral neuropathy...i think my twitches are different than Pals, as the twitching seems to migrate all over the body and are pretty violent at times...i even twitch in my diaphragm which is pretty disconcerting at times...
 

fmarino

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Hello siuska

You say you don't twitch like a PAL: how do PALS twitch and what makes your twitching different?

You also say you have peripheral neuropathy: do you know what kind and what is causing it? Do you have any sensory symptoms?

I'm not sure if you have read my post, but do you have any idea what I might have?

P.S. Thank you so much for what you said Wright. I think it needed to be said and I'm glad you had the courage to say it. I am one of those people who are scared right now.
 

CindyM

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As long as we make an effort to be considerate of each other's feelings, we are on the right track. And Wright did express his esteem for everyone, which is what makes this forum one of the best on the internet, imo. :-D
 

siuska

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no clue

no sorry F,
i wouldn't have a clue what you have...i'm not licensed to practice medicine over the internet...My twitching is not like Pals which is more 'rolling' type...mine are very strong, brief and body wide...more like a BFS-really annoying now, very scary when i got them because like you, my first thought was ALS...and what really scared me about ALS was the financial ruin i'd be facing, that and i wouldn't have a primary care-taker...it took some time and lot's of money and different neuros before i got a diagnosis...you could probably start your journey with having your GP send you to a major university hospital for testing...they will do MRI's, EMG/NCV tests along with lot's of blood tests...cymbalta helped me for the cramping pain....which was disabling and prevented me from work for about three months...it took the cymbalta and physical therapy to get me back on my feet...the doctors don't know why i have peripheral neuropathy or how i got it so quickly...i had a partial finger amputation (accident) six months ago that might have stirred up some CNS issues...at this point, they are still trying to figure out the type and underlying issue of PN...i also have a pituitary tumor so maybe some hormone fluctuations are kicking the CNS switch on....oy veh, lot's to keep track of...so see?
Everyone's body is different, and your problem could be anything....i wouldn't consider ALS at this point...go into this journey with an open, positive mind and persistance. Make sure that you get copies of your medical reports and talk to us here about docs and different medical centers...CNS of any type can be hard to diagnose and time consumming so many of us here have experience with not just one, but several neuros, rheumos, endos, ect...
 

ZenArcher

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The thing that bothers me the most is conjecture. I don't mean to be argumentative (well not too much) but show me where 7 years is a long time to have symptoms without weakness. Be ready to defend it to because I have evidence showing the opposite in the form of a letter from my neurologist. Let's face it nobody can tell you what's normal or how fast or where or how or why. Hell the diagnosis itself only means that you have these symptoms and nothing else is causing it.

The diagnosis of Amyotrophic Lateral Sclerosis [ALS] requires:
A - the presence of:

(A:1) evidence of lower motor neuron (LMN) degeneration
by clinical, electrophysiological or neuropathologic examination,

(A:2) evidence of upper motor neuron (UMN) degeneration
by clinical examination, and

(A:3) progressive spread of symptoms or signs within a region or to other regions,
as determined by history or examination,


together with
B - the absence of:

(B:1) electrophysiological and pathological evidence of other disease
processes that might explain the signs of LMN and/or UMN degeneration, and

(B:2) neuroimaging evidence of other disease processes that might explain the
observed clinical and electrophysiological signs.

That's taken from: http://www.wfnals.org/guidelines/1998elescorial/elescorial1998criteria.htm

So here is a simple fact if you don't meet the requirements above then you do NOT have ALS at this time. I would also like to know where it says that weakness precedes or goes hand in hand with twitching. My understanding is that fasciculations are caused by neurons beginning to lose connection to the muscle when they die and as neurons die neighboring neurons will branch out and try to pick up the slack. This continues until at some point there simply aren't enough neurons to cover the muscle at which point it will begin to weaken and atrophy. That would mean that dependent on the rate of neuron death the time between neuron death, weakness and atrophy could be months or years. I work with an individual who was diagnosed 9 years ago and doesn't even use a cane to walk which proves that progression can be extremely slow.

I guess my point to all this is: Facts.
 

givenin

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My husband experianced cramping in muscels for years with sporadic twitching then about 2 years ago the twicthing increased along with muscel weakness fairly quickly so when we went to see the first Neuro she was sure what it was before the tests were done. But you still have to cover all else there are allot of other things that have similar symptoms the same as ALS.

Hang in there.
 

Lorie

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Thanks Jeff! Wright maybe Wrong

So if someone is seeking advice on here and giving symptoms that truly have nothing to do with the etiology of ALS, I think it's irresponsible to tell them that you know of a PAL that has such a symptom, but it truly has nothing to do with ALS

As far as I have read, weakness will precede twitching, in the majority of cases, or at least go hand in hand. ALS is rare, twitching before weakness is rarer still.


Initial Symptoms of the Disease:

At the onset of ALS the symptoms may be so slight that they are frequently overlooked. With regard to the appearance of symptoms and the progression of the illness, the course of the disease may include the following:

muscle weakness in one or more of the following: hands, arms, legs or the muscles of speech, swallowing or breathing
twitching (fasciculation) and cramping of muscles, especially those in the hands and feet
impairment of the use of the arms and legs
"thick speech" and difficulty in projecting the voice
in more advanced stages, shortness of breath, difficulty in breathing and swallowing
The initial symptoms of ALS can be quite varied in different people. One person may experience tripping over carpet edges, another person may have trouble lifting and a third person's early symptom may be slurred speech. The rate at which ALS progresses can be quite variable from one person to another. Although the mean survival time with ALS is three to five years, many people live five, ten or more years. In a small number of people, ALS is known to remit or halt its progression, though there is no scientific understanding as to how and why this happens. Symptoms can begin in the muscles of speech, swallowing or in the hands, arms, legs or feet. Not all people with ALS experience the same symptoms or the same sequences or patterns of progression.

Wright:I am not trying to scare people. I am not going just on one PALS symptoms. If you were familiar with me, not only do I know a lot of people on this Forum. I know people with ALS ouside this Forum. Bert I know with ALS for 25 years, on Life Support for 5. He can still type with his toes. In your conclusion I would think he couldn't move by now. My brother was Dx in March 05. In June 06 he lost total use of his arms. His arms dangled (like a puppet, figure of speech) for 1-1/2 years before his legs started getting weak. He still has some use of them. He can talk well and eat. In your theory,whouldn't He and Bert be long gone by now. They have beat the odds. Or am I being factual about the slow progression. ALS is not new to me. I read on your profile that you are interested about learning about ALS. Not that you have ALS. Are you a Student/Doctor What?

If a person is Dx with BFS what are they doing on an ALS Forum, if they were not concerned about ALS?
"giving symptoms that truly have nothing to do with the etiology of ALS, I think it's irresponsible"

Should I say more?

Lorie
 

siuska

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Zen is right, time will tell all...but, i also want to mention that twitches might be axons snapping dead away or, just irritable nerves...there a lots of BFS'rs out there that never get ALS...and there is a lot of nasty CNS stuff that isn't ALS...
i hope this new government we are going to get actually gets serious about research...and getting our toxic environment cleaned up...check out:
http://www.scorecard.org/ to find out what neurotoxins are in your neck of the woods....
 

Blizna

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Lorie,

its medically impossible to have twitching 7 years before developed ALS. Twitching is caused by reinnervation, and reinnervation takes places when muscle starts dying. Thats why muscles twitch until they are completely away.

In ALS, its possible to have cramps a few months before, since its sign of beginning nerve damage. From what I read very rare is have cramps more than 8 months before DX.

Those pages who claim that first sign can be twitching are wrong - every person who said he had only twitching was told by neuro that affected limb does is weaker or rigid. The problem is, that in some muscles you dont have to feel its weaker. Clinally, you cant have twitching caused by ALS in absolutely healthy muscle, and if so, then weakness has to follow very early.

Your brother could have benign twitches, with cramps nobody knows, they can precede...

But after year of twitching Boxer can be pretty fine, beucause he doesnt have ALS.
 

siuska

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twitching

i disagree with Blizna...one can have twitching first as a sign of ALS...and one can have it for awhile...there are no hard fast rules on the emergence of ALS...but, i don't want to cause any anxiety out there unneedlessly, so i want to state ALS is Extremely RARE...there are hundreds of things that cause Twitching....my Neuro has a condition that if he bumps his muscle it looks like a can of worms swirling around underneath- had it all his life!
i kinda wanted to ask him if ALL his muscles twitched like this, but uhh, then that would be kinda personal!
 
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