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franky2417

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Jul 27, 2012
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Learn about ALS
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Ma
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Woburn
Hello All

I just wanted to start by thanking everyone here for the support they provide and wishing everyone the best with what they are going through.

I have been having the following symptoms which seem to be progressing over the past 3 1/2 months and have seen 2 nuero's during this time. It started one day with being very shaky and feeling like my legs were made out of Jello. I then saw a Neuro for the first time and she stated that there was nothing abnormal but during the last part of the exam noticed a tremor in my hands. She said that it was most likely performance anxiety but that a differential diagnoses could include something more sinister such as MND.

About 2 weeks later (early May 2012) I went back to her and she did a nerve conduction/EMG on both my upper and lower left extremedies. All results came back normal and she said she could rule out MND.

Since then I continue to have twitching espeically in my hands/forearms as well as legs. I have also noticed some pain in my forearms and shaking when I exert a lot of pressure on my hand muscles. I saw another neurologist a an area hospital (that has an ALS center) about 1 month ago and he also stated that he saw no indication of MND.

Lastly I have been having issues swallowing where it feels like I have a constant sore throat and that I am getting liquids/small foods down the wrong pipe (not sure of the clinical term). Also it feels as though my tounge is twitching and shaking more when I stick it out.


I guess my questions are centered around if I should go to a 3rd neuro? Or do my symptoms sound like early onset of ALS?

To summarize I have seen one neuro 4 times over the course of 3 1/2 months who thinks its anxiety. She did an EMG which was completely negative and I have seen a second Neuro for another opinion.
 
No I wouldn't see another neurologist just yet. You could wait awhile. Sometimes time is a great healer.
 
Please listen to your doctors.

What is the difference between a BFS twitch and an ALS twitch?

There is a BIG difference between the two. ALS twitches are caused by dying muscle tissue as the nerve endings disconnect between the muscle and brain which in return cause the muscle to die and shrink. This is a SECONDARY action and it ONLY happens AFTER the muscle has started it's dying process, NOT before. So with that, ALS twitches (by the time you notice them or IF you even notice them at all) will most certainly have some kind of weakness or immobility of the muscle involved at the same time. Also, ALS twitches and symptoms usually start in a hand or a foot and will migrate from that point forward progressively and continually and relentlessly. They will NOT be random twitches like BFS has. You won't have a twitch in your finger one second, and a twitch on your back the next and a twitch in your calf the next and a twitch on your tongue the next with ALS. ALS starts in one spot and progresses continually through your body, not at random. ALS twitches are usually very fine and again, have WEAKNESS associated with them.

The EMG is always positive in ALS" That's about as plainly as you can put it! ALS twitches are CAUSED by dying nerve endings AND dying muscle tissue. It is a SECONDARY action to the disease! Not a first symptom that causes muscles to die later-on. If you have twitches and it was caused by ALS, you would ALREADY have the disease present in your system which would show-up on an EMG. Twitches without weakness and with a clean EMG are NOT ALS. It can't get any clearer than that!

The bottom line here is simple, BFS is common, ALS is not. BFS twitches and odd symptoms are in no way related to ALS twitches what so ever, and unless you have several dirty or abnormal EMG's and a specific diagnosis (under strict guidelines), and have no "true weakness or "true" atrophy, then YOU DO NOT HAVE ALS!
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Twitching in ALS is a direct result of the disease running it's course. It is NOT a pre-curser symptom! In other words, if you have twitches that are associated with ALS, it means the disease is ALREADY running its course because muscles diseased with ALS don't begin to twitch UNTIL micro fibres begin to die and disconnect. With that, ANY EMG at ANY TIME would CLEARLY show the disease, no matter how far along, or how early you THINK you are. There is no "incubation time" or "window frame" once ALS twitches have started. If it's ALS and you are twitching, the disease is ALREADY well into running it's course, and of course, will ALWAYS show up on an EMG, no matter where it is performed on your body.

With that, just because you twitch in one small place on your body doesn't mean ALS isn't running all through it. Nerve pathways run the entire length of your body. You can get tested just about anywhere and it will show-up, just like getting a blood test will show why you have a cold sore, even though a cold sore almost always appears and re-appears in the same exact location, over and over again, it is STILL running through your whole body, just like ALS is.

Do NOT confuse "perceived" weakness with clinical weakness, nor confuse fatigued feelings with true muscle weakness. True physical muscle weakness and clinical weakness do NOT come and go. It is permanent and on-going to the point where you completely lose control and can no longer use that limb, (forever), and then it MIGRATES from there to other parts of the body. ALS is not random, and it certainly doesn't come and go like BFS does.
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What is the difference between "perceived" weakness and "clinical" weakness?

A tell tale sign of ALS is clinical weakness. This is REAL weakness that is permanent and continually progressive. It is caused by dying (or already dead) muscle tissue and/or dead or disconnected nerve endings between the brain and muscles. Once this happens, you lose control over that muscle PERMANENTLY, which leads to dropping things, the inability to unscrew lids off of jars, the inability to hold your coffee cup or even raise your fork to your face when eating. When it's in the legs or feet, falling down or the inability to stand or get up from a chair is common, not being able to stand on your toes or walk on your heels because the muscles are dead. When this clinical weakness is associated with ALS, it migrates onward from that point with no looking back. There are no good days or bad days, meaning, you won't lose control of your hand one day and regain control of it the next. Once muscles and nerves have died, they are dead and can't be brought back to life.

Fatigue and "perceived" weakness is common with BFS and can cause weak or rubbery legs, difficulty raising an arm or leg into the air one day, but not the next day, a drained feeling with no energy and even actual "weak" feelings where your arm just feels like lead and you have to rest it constantly. The difference between these kinds of BFS weaknesses from ALS weakness is that BFS weakness (which again isn't really true weakness at all) will get better in a couple of days, where ALS weakness is continually progressive and NEVER looks back. A neuro can tell a case or clinical weakness associated with ALS the minute an ALS patient walks through the door. By the time you notice the weakness and/or twitches associated with ALS (enough to warrant making a doctor's appointment), you would already be a few months into the disease and a good clinical exam will find problems you weren't even aware of. BFS "weakness" on the other hand, is pretty much only fatigue and although you may "feel" weak or drained-out, if push comes to shove and you put aside the pain, fatigue, stress or whatever else you have, you still have your real strength. I mean if a car was coming at you and you had to jump out of the way, you still could, where an ALS patient couldn't move at all.

ALS is a nerve PATHWAY disease so if you have twitching and weakness BECAUSE of ALS in something like your little toe, and you get an EMG ANYWHERE BETWEEN that toe and your brain, it WILL show-up on the EMG because it is looking at the PATHWAYS BETWEEN that toe and your brain. ALS is also a body wide disease BEFORE it spreads to NOTICABLE symptoms. It is there long before 99% of the sufferer's even notice it, (contrary to what a lot of rookies will tell you). The twitching in ALS means it has already been there a while, has DONE damage and now the muscles are reacting by quivering. It is the whole enchilada that has to be looked at with CLINICAL weakness and a bad EMG. Without ALL of those symptoms (and then some), you have ALS about as much as someone with a common headache has a brain tumor.
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This sounds an awful lot like someone else on this forum

Jen
 
Jen

Do you have a link to the other post so I can read their story?

Thanks!
 
Try Healthy1, Rocks, dkootz
 
I want to thank all of you for your responses to me.

I had another question that I've been trying to figure out searching on the site but haven't been able to determine anything. One of my main complaints I keep having with my twitching and other symptoms is some amount of pain in my muscles/joints (I can't really tell which it is). More specifically when I do certain actions I'll get pain in my forearms or wrist or finger where it feels like I may have over exerted myself but I haven't done anything that would cause it. Also the pain seems to be quite constant as soon as I use that part of my body (IE my middle finger anytime I use it I get a strained muscle feeling all the way through my hand) and it doesn't seem to get better with significant rest. It does not feel like a normal cramp but instead a painful/fatigued/strained muscle.

Has anyone had any experience as this being part of the initial symptoms of MND? I seem to find alot of conflicting information from doctors and online about pain being associated with these diseases. One of my fears is that my muscles are weakening and I'm over compensating with other muscles and that is causing the strained feeling (I've also started to get it in one side of my tongue too it seems).

Thank you again for trying to answer my questions. I really appreciate any advice
 
Thank you all for your responses. I had another question I was hoping you guys could help me with (I have got some conflicting news from my doctors and other places).

I have this issue where I keep getting strained muscle pain in certain muscles/joints of my body. For example when I put pressure on my middle finger on my dominant hand I get this strained muscle feeling like I had been doing something crazy with it (where I haven't done anything to cause that). Same thing goes for muscles in my forearms and one side of my tongue. Its not a cramp really but more of a feeling like I've strained or hurt my muscle or joint (almost a stabbing type pain when I do certain motions). I am worried this is caused by me over compensating for muscles that are weakening causing my other muscles or joints in that area to be strained to do my every day tasks.

I was wondering if anybody has experience in this type of pain being a early symptom of MND or if my worry makes any sense. Thanks again everyone
 
I guess to clarify as well things that cause pain might be holding my phone in my hand or trying to open a bottle of soda, etc. Normal actions
 
Questions/Comments for franky,

How old are you?

Be specific about which muscles are weakened and which are compensating. Use Gray's Anatomy if you need names.

Do you wear a hat?
 
Seaside

I am a 29 year old male. The muscles that I feel it most in are typically the top and bottom of my forearms, the muscle on the pinky side of each hand, the large thumb muscle in the palm of your my hands. Also today one side of my tongue hurts when I exert pressure on it (such as swallowing).

Not sure what you meant with the hat thing but yes, I do like to wear baseball hats
 
I'm kind of thinking if you're not believing two neurologists, and a neg EMG, you're not going to believe us, either.

but--in answer to your question, ALS doesn't present with pain, it presents with clinical weakness in some area.
 
Thanks notme for your response. I guess I'm just concerned since my EMG was 3 months ago before the majority of my twitching started and I have all of these strange symptoms that the nuero can't seem to explain (even she mentioned at first that the tremors she noticed could indicate something sinister like MND, which is what worried me to begin with).

Also Jen/Scott I read the rocks/healthy1 stuff but I just wanted to assure everyone that I am not that person posting under a different name (although some of our symptoms do sound similar). I appreciate everyone's advice and input here and don't mean to sound like I'm not listening or appreciating any of the advice given.

Thank you all again.
 
Id like to know IF there are tremors associated with ALS, I have them also.
 
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