Various Questions in Regards to ALS

[twitchy23]

Hello, my first post here. I just have some questions and prefer to keep my case offline (but am open to sharing if needed). I did read the sticky note and I searched this site for some topics, but I did not see the answers clearly, or I may have not used the right phrases when searching. If this is somewhere else on this website, I apologize. I have until February to see my neuro, so I would like to just ask for opinions until I can speak to him.

1) If constant, widespread twitching has been happening for over a year, then weakness developed in a hand (so weakness happened after), but the hand that got weak is not twitching all the time, it twitches like the rest of the body, sporadic, few times a day, in different spots. Is that something to worry about in regards to ALS? Or if an ALS hand was getting weak, would it be twitching more than anywhere else?

2) If the RIGHT hand started getting weak (but is still functional, just loss of some grip strength), then the LEFT leg started getting weak (slight changes in ability to run or go upstairs), is that something to worry about in regards to ALS? The other body parts are fine. Or is ALS usually consistent in affecting one side upper, then the other side upper, before going to lower?

3) I heard many different arguments about this, but it seems pretty logical to me that if the EMG was not performed in the specific muscle that was experiencing weakness, then it does not really matter if it was clean. It should be performed in the questionable muscle that is experiencing weakness. I think this makes sense, but I’ve heard other opinions. What have your experiences been?

4) Twitching – for the twitches in ALS, can you feel them? Can you see them? Always? Sometimes? It is hard for me to imagine that a twitch is happening, but someone is unaware because they can’t feel it. I can feel and see most to all my twitching. I also have just weird crawly or buzzing feelings throughout and I cannot determine if these are small tiny twitches that I can’t see but am feeling (maybe fibrillations?) OR if these fall under “sensory” issues. This is why I am asking about feeling and seeing.

These have been questions I’ve searched for on other sites and could not find clear responses. I did try searching on here for 2 hours before writing my questions. I had more, but when I found the answer somewhere, I deleted it. So I am trying to be mindful. Apologies in advance if I’ve offended or upset anyone.

My heart goes out to everyone suffering.

 

[Nikki J]

Well, I was weak then I twitched in the weak muscle then I was weak in another muscle then it twitched. I don't twitch elsewhere. My experience.
Generally with limb onset limb one shows a fair amount of trouble then it either goes to the other side ( such as right arm then left) or to the other limb on the same side ( right arm, right leg). Crossover as you describe is VERY unusual.
In very early disease EMG can be normal in the other areas. Mine was normal in areas that had zero symptoms but very abnormal where I had issues and the surrounding muscles. But if you are concerned with diffuse twitching then if twitching is significant EMG would have showed
I have all kinds of twitches. See and feel, feel not see, see not feel. I have never had buzzing but it seems like it is often described by people who worry but don't have ALS

 

[twitchy23]

Thank you so much for your time and information. It does help me understand.

I realized I forgot a question (I was so focused on trying to make sure I ask the right ones that I forgot this one):

The right hand has been weakening since Feb 2014. The grip/pinch is mainly affected, and my hand looks different, and one neuro did write "is smaller". It is 9-10 months later, and it is still only the grip that is off. I can lift, punch, pull, snap, button, turn...all without any issues. Also there were some weeks where it was the "same" , not worse or better.

Does this sound like an ALS case? Would I have had other symptoms in my hand or arm by now?

Thank you.

 

[texastracy]

Everyone's progression varies. What is happening with you is not likely to be the same in anyone else. I started with severe muscle cramps in my legs. and weakness in my hands followed by atrophy in both hands. Then the falls started and breathing issues.

Think good thoughts. There may be another issue going on with you.

 

[Atsugi]

Nikki's experience is broad and deep and relevant. We all pay attention whenever Nikki posts. I'll try to answer, too, best I can.

1. People with ALS rarely complain of twitching all over sporadically and in a diffuse manner. Basically, when the motor nerve in the brain is destroyed, the muscle gets useless (hand can't perform some function) and twitching starts in that same area--signalling that the nerve is trying in vain to communicate with the muscle.

2. A right hand and a left leg is not typical. Never heard of it. ALS proceeds in a serial manner as it progresses down the brain and brain stem, destroying motor nerves one by one.

3. I think only a neurologist should answer questions about EMGs. The nervous system is pretty complex.

4. Twitches: sometimes they're felt, sometimes they're not. Wide reports about this.

5. People aren't symmetrical.

I don't think you have ALS. Tracy was right to say there may be another issue going on with you.

 

[twitchy23]

Thank you all for the time you have taken for me. I appreciate it very much.

Atsugi - I am sorry, I should have been more clear: The neuro meant "smaller" as in "getting smaller" - in Germany the word is "verschmalerung". So, yes, my hands are not symmetrical, but the neuro meant it as in "shrinking" in my right hand.

Only if you have any input and extra time - would anyone be able to tell me if these are signs of maybe another MND, besides ALS? I am asking because you had said something else is probably going on. I have a couple of ideas of what, but I would just like to ask for opinions if these are signs of a different MND. I am not even sure....in different MNDs, is there even twitching, like in ALS?

Again, many many thanks for helping my understanding. I am pulling for everyone, support ALS research and am by your side in spirit.

 

[twitchy23]

I read through this website more and read other posts, where many people shared their story (and even pictures) and I now feel I would like to share my symptoms, previous tests and concerns to see if anyone feels I should try to get to a neurologist before my appointment in February. I am worried about MND, but, also about permanent nerve damage happening, if this is something else.

I would do this in a new thread (as it would be a different topic) and I just wanted to ask before I do this, if it is ok. I do not want to annoy or upset anyone.

 

[affected]

Twitchy no it is not ok.

One thread per person determined to show their symptoms as ALS.

You have actually been answered here already and you have listed a lot of what you feel happening to you. If you are concerned about permanent nerve damage get back to your doctor. We know ALS really, really well. We do not discuss other diseases here. The only answer we can give in truth, is go back to your doctor.

I hope you can sort out what is happening, with your doctor. The people here dealing with ALS have given you generous time and support already.

 

[Nikki J]

Definitely stick to one thread. And equally definitely if you feel there might be something that waiting will cause permanent damage go to a doctor to get it checked but if you feel in your heart that you might have ALS and need to tell your story ( succinctly please) I for one will try to answer if your concerns were not addressed already here or in the sticky since you have been so polite

 

[twitchy23]

Thank you for your honesty Tillie and generous offer, Nikki. I will take both of your advice and will first check with my doctor. I've been dealing mainly with my orthopedic doc until I can see my neuro in Feb. I will first see how that goes and if I still feel the need to reach out I will come back and just to this thread. Sending peaceful and well wishes.

 

[Nikki J]

Good luck I do not expect you will need to return but if you do this thread will likely be closed automatically due to inactivity. In that circumstance you may start a new thread

 

[twitchy23]

Hello Nikki, I am back and I apologize if this upsets you or anyone. I did talk to my orthopedic and he does not have any real answers for me. I have a new persistent symptom and well, I am terrified by now. I've asked many people of their opinions, but I think the most dependable and respectable opinions are those you and others on here give. So I would like to share my story, I hope it's not too long.

34 female

Current symptoms:
-Twitching for 1.5 years now. Started locally, went body wide. Constant, all over. Every kind of twitch. There have been weeks where the twitching died down to almost nothing, but they always started back up.

-Since February, right hand grip, weakness and noted "shrinkage" by a neuro. Positive Tinel sign. I can do everything else with my hand, except grip/squeeze like I used to. I do have a confirmed ganglion cyst in my wrist which will be removed in January, but it is unclear to the hand surgeon and orthopedic doctor if this is what is causing my weakness and "shrinking". They both said to go to the Neuro, and that is not until February. The "shrinkage" is mainly in the "snuff box", over my thumb knuckle, and a dip in the muscle between thumb and index finger. I attempted to post a picture, at the bottom.

-Mouth/throat symptoms. I do not slur or have problems swallowing, but, I have had to wipe excess saliva from the corners of my mouth since Oct. It happens so much, I get sores. Since about 1 month now, I have a persistent twitch in my right jaw/cheek that has now moved to my lips. Since it moved to my lips, I have been biting my lips and my cheek, all on the right side (where twitching is happening - also where my hand weakness is happening). The lips, it feels like half twitch, half tingling. With my throat, I have a lump feeling, which I've done lots of searching on here, that ALS does not have a lump feeling. I do not have it all the time, so I feel like this is anxiety and I am not too concerned with that. I do get some things "stuck" sometimes when eating.

-Jerks: Lately I have been more jerky, mainly in my legs, they'll just pop up or out, out of place, like a quick, full limb twitch. I have not noticed it much with my arms. This is really new.

Other symptoms I am having, but am not too concerned about, but thought I would mention them:
-I have had weakness in my left leg twice. I have had to get lots of cortisone shots in my back and have lower left back pain, and lots of physiotherapy. The weakness/gait has always gotten better. Sometimes I get doubts where, "Well maybe my back muscles are weakening and that is why they are so tight and hard, and my thigh muscle is so hard and painful."

-I get a tingling in my right forehead, like as if something is crawling on my hair or as if my hair was moving, but it's not. Comes and goes. I know sensory stuff is not ALS.

Tests I've had:

-Lower back MRI - showed nothing - so this weak leg stuff, is all undiagnosed, just "irritated nerve root" is what my orthopedic claims. He just shoots me in my back when he finds a sore spot.

-MRI of my right hand - a very small, ganglion cyst, with extra joint fluid floating around.

Neuro tests - were all clean, for the most part:
- MRI and CT of Brain, and lumbar puncture - before twitching even started (In May 2013 - because I had sudden left side weakness/numbness). They did not find anything. All "psychosomatic".

- Several nerve conductions tests (before and after I had the left leg and right hand weakness, but right when the problems started).

- An EMG, when I started my right hand problems. The EMG was only performed once in my left calf and left upper arm. Everyone wonders why the neuro did not perform the EMG in my right hand because that is where I was starting to have problems. I have read that it really does matter where the EMGs are done, so I can't be comfortable with my clean EMG, if you can understand.

- All reflex tests were normal, except I had positive "Tinel", some weakness and shrinking in my right hand.

- Endoscopy - normal, showed "very mild to normal" acid reflux and gastritis


So my biggest concerns are my right hand (that it won't get better after the surgery, since it is not confirmed this is what is causing my weakness)
-The twitching in the right side of my face and lips, with biting of cheek and lip in the right side
-The new jerks that are happening

I read soooo much on this website and searched and searched. I've learned so much, but I also learned that many of my symptoms were someone else's "onset" symptoms, and combine that with the twitching, I am very scared. I think you and the others on here are really the experts when it comes to "experience, feeling part". I have until February to wait so any advice or any words for me are very appreciated. Are any of these things, or a combo of these things, concerning or familiar? Are any a total waste of worry? When something is onset, isn't it usually in one place for a bit, before another is affected?

In exchange for your support, I don't know how I can help, but if there is something I can do, I am open, so please tell me! I've already donated, but I am open for other ways I can help, or if you have a specific charity I can also donate to? I am also willing to learn other ways I can help. (Also, I do not plan on writing anymore in the forums after this, unless I go to my neuro and get bad or concerning news).

This one shows the deepening of the snuff box and the reduced "tissue" around my thumb knuckle.

This one shows the dip in the muscle, or the start of it. Note- my left hand does not look like this at all, and I've watched and have taken pictures of my right hand as these areas were changing, so these areas have not always looked like this.

 

[Panos1978]

Hi Twitchy,

I am so sorry for what is happening to you. Why do you have to wait until February?
I also think that you must have a spine MRI to check the route of your right hand. There might be an issue there.
When was that EMG performed? I agree that its really strange for the doctor to perform it to the wrong side...!

 

[twitchy23]

Thank you Panos. I made my appt in December and the waiting period for the next appt is 2 months out! It's like that here with all neurologists, unless you go to "Self-Pay" neurologists. I may just have to do this. I am not sure I can wait until February.

Since my post, I developed an immense increase in localized twitching but with soreness and real pain in my left shoulder and arm. I have less twitching today, still pain but now weak and uncoordinated feeling in my whole arm. I did nothing to my arm for this to happen. No exercise, nothing strenuous and no injury.

I understand the pain/soreness points away from ALS, but 1) it's not always the case, so I've read and 2) still doesn't mean something else may be going on.

I don't know why he performed the EMG in my left arm, and not my right hand. I asked him if the two places he stuck the needle in was enough and he said that ALS would have shown up if it were anywhere in my body. I have since learned the opposite actually....so it makes me question my neurologist a little, if you can understand. The EMG was in May 2014, 10 months after I started twitching (July 2013).

Also, trying to ask for a doctor to prescribe an MRI here is almost impossible. The cost comes out of the doctor's budget so they pick and choose who gets the MRIs. A doctor literally told me that if shots and other methods (without properly diagnosing via a MRI type test) help with symptoms in younger patients, that is the route they choose to take.

By the way, my profile says Ft. Lauderdale, where I am from, but I am currently living and working in Germany.

 

[twitchy23]

Hi, I wrote all my symptoms but did not get replies from experienced members, but I think it's because my post was very long. I was not aware of how long it was when I typed it in the reply window. So, now, I have new symptoms and would like to try again to list again as short as I can, and in the same thread as I was told to do.

I find it confusing when I read in the sticky that pain or excess saliva is not ALS, but then others write in their posts that was part of their symptoms, early on. I could be missing something important and am asking for your help there. I see my neuro in Feb.

34 year old female

Bodywide:
1) Since July 2013: Twitching all over, all kinds of twitches, with hot spots. No cramping.

Question: I now get pain in cramp spots like calf and foot arch like it may start to cramp, but doesn't. Does this happen in ALS, before cramping?

2) Since Dec 2014: Body jolts/jerks/big twitches. Not just before falling asleep.

Mouth/Throat:
3) Since Oct 2014: Excess saliva/constantly wiping the corners of my mouth. I do not choke on anything and can eat, drink fine.

4) Since mid-Dec 2014: Biting/nipping at tongue. Tongue thrusting against teeth/roof of mouth. No slurring issues, but it seems to me like it could be starting. Right now, I am scared to eat or talk.

5) Since mid 2014: Globus in throat, has gotten more severe. Sometimes hard to breathe. Clicking and twitching in throat/neck.

Question: is this even a symptom of ALS? It was hard for me to tell from searching posts.

Right Hand:
6) Since Feb 2014: Thenar pain, twitching, weak grip and acknowledged „shrinkage“ of the thumb/index muscle. A Ganglion cyst was found and will be removed. It is not clear to the Hand surgeon if the cyst is causing the weakness (because that is rare).

Left arm and shoulder:
7) Since end of Dec 2014: Major twitching in the entire left shoulder and arm, with immense pain, as if I had bruises all over, and weak/clumsy in whole arm and hand, which has gotten worse. The pain has died down.

Question: I read that pain, not nerve pain, but muscle pain, can be ALS. I can't tell - what does that mean?

Left leg and back:
8) Since Oct 2013: Left leg pain, twitching, weakness, also in lower back and in butt. But would improve with physio and shots. Concerned about how the weakness had come back, 3 times now.

Several symptoms, kind of all over. Are any of these or a combo, concerning?

Also I am still open to donate more to this site or to other places if you advise where you prefer or where is best. I would like to help where I can, if I can.