Twitching - healing or dying?

[Xina535]

Hi - if twitching accompanies an abnormal EMG, then it is no longer BFS, I assume...

If twtiching is not related to BFS, but to nerve damage, is that a sign of healing or dying?

My twitching had died down a tiny bit since cortisone therapy. The gabapentin is helping the pain. I performed just a few small expercises that I am suppoed to, and now my arm is totally restless. Twitches all over. This is making me so uneasy, I want to chop my arm off.

I twitch when the muscle is in use, too.

[Xina535]

No one? Is twitching due to reinnervation if it is not benign? Or is it a sign of dying...or both? Or no way to tell? Just have to see if weakness worsens or improves?

My forearm on this weak arm has a major hot spot for weeks now. The neuro saw it. It twitches while using my muscle. Like when I tense my forearm, it still twitches. I can't remember if that is a bad sign or not a sign of anything at all. I forgot to ask the neuro that.

[misterjuanperalta]

I don't know enough to opine with good information.

[leroyb]

I don't think there is even agreement in medical community Xina. One view is the twitching is caused by unstable giant motor units which are formed when healthy units take control of muscle previously innervated by now diseased motor neurons.

[Xina535]

I don't think there is even agreement in medical community Xina. One view is the twitching is caused by unstable giant motor units which are formed when healthy units take control of muscle previously innervated by now diseased motor neurons.

Isn't that "reinnervation"? The healthy ones trying to activate the dying ones?

[Yuliasir]

Xina, as it was highlighted many times by the most educated specialists in MND, twitching itself is a nonspecific symptom. Moreover, twitching could be caused by several DIFFERENT underlying reasons. It could be due to decreased firing threshold, as it probbaly happens with hyperthyroid people, or due to disfunction of potassium channes in channelopathy, or it could be on the nerve level, like it happens in neuritis/MS (which also involves local neuritis) or in other MND, or in physical neural trauma. In the case of neuritis, twitchihg occurs, as far as I understand, both in cases of denervation and re-innervation, so it is really hard to say which process is predominant right now. When your inflamed nerves are healing, they may form same pattern on EMG like damaged ones (becasuse they ARE damaged). The difference is wheter you can regain strength or not AND whether the process would be confined in one nerve group or spreading to others.

So again you have to be patient, do your excercises and find a basis in the fact that you already regained muscle strength as per follow-up after short cortison therapy.


I am thinking also about the fact that MRI really is a bit strange way to discuss whether you have herniation in the neck or not.
All MRI's I know are done when the patient is laying down. It is OK and no matter for the issues like tumours or MS/stroke lesions, but for me it looks quite obvious that it does not provide full and correct picture of what is going on in a spine. Well, most of our pain and other issues we experience on being standing and sittings, so I believe that is why MRI often does not correlate with the patient\s subjective feelings and clinical picture in case of suspected compression issues, and is so much debated as you could see on your own example.

[Xina535]

Xina, as it was highlighted many times by the most educated specialists in MND, twitching itself is a nonspecific symptom. Moreover, twitching could be caused by several DIFFERENT underlying reasons. It could be due to decreased firing threshold, as it probbaly happens with hyperthyroid people, or due to disfunction of potassium channes in channelopathy, or it could be on the nerve level, like it happens in neuritis/MS (which also involves local neuritis) or in other MND, or in physical neural trauma. In the case of neuritis, twitchihg occurs, as far as I understand, both in cases of denervation and re-innervation, so it is really hard to say which process is predominant right now. When your inflamed nerves are healing, they may form same pattern on EMG like damaged ones (becasuse they ARE damaged). The difference is wheter you can regain strength or not AND whether the process would be confined in one nerve group or spreading to others.

But when you have nerve damage and weakness, then twitching where that weakness is occurring is not benign, or due to potassium channels or related to thyroid stuff, right? Or are those all still possibilities?

So again you have to be patient, do your excercises and find a basis in the fact that you already regained muscle strength as per follow-up after short cortison therapy.

I did not take this as true strength gain. The neuro says it was not due to my muscles gaining the strength back just from exercises in 1 week. He said it was purely from the cortisone. So I took it as like a "fake" regaining of strength, if that makes sense. Like the cortisone helped inflammation die down so I could move better, but not stronger. I guess I got confused there.

I am thinking also about the fact that MRI really is a bit strange way to discuss whether you have herniation in the neck or not.
All MRI's I know are done when the patient is laying down. It is OK and no matter for the issues like tumours or MS/stroke lesions, but for me it looks quite obvious that it does not provide full and correct picture of what is going on in a spine. Well, most of our pain and other issues we experience on being standing and sittings, so I believe that is why MRI often does not correlate with the patient\s subjective feelings and clinical picture in case of suspected compression issues, and is so much debated as you could see on your own example.

Well, I'll be getting yet another opinion tomorrow from a neuro surgeon. He should be more of an expert in all of this......I hope!!!

[Yuliasir]

Xina,
I can not help you becasue you are thinking in different cathegories.
You think about benign or malignant weakness (at least you are asking about this, as far as I understand), but I can not tell you whether your weakness is malignant or benign. Weakness itself means nothing. It could be reversible or not, but even if it is irreversible - the process which caused it could be local and limited (and it this case it could be called more or less benign) or spreading for the whole nervous system (in this case it would be malignant of course).
Your process seems to be limited by your plexus branch and reversible - considering the fact that cortison had restored your strength in one week.
You consider this as false strength recovery, and this is also incredibly strange for me. A week ago you can not resist the pushing force and were clinically weak. Now you could resist this force, your clinical weakness is gone but you consider this as a false recovery...
If we have such different understanding of simple words, how can I help you then?

[Xina535]

Xina,
I can not help you becasue you are thinking in different cathegories.
You think about benign or malignant weakness (at least you are asking about this, as far as I understand), but I can not tell you whether your weakness is malignant or benign. Weakness itself means nothing. It could be reversible or not, but even if it is irreversible - the process which caused it could be local and limited (and it this case it could be called more or less benign) or spreading for the whole nervous system (in this case it would be malignant of course).

So there is no way to tell basically. ? Just have to see if my arm improves or worsens. Right now it's about the same. I have very shaky moments, some stronger moments. It makes me think about other muscles possibly compensating....Do you think if it were malignant or due to MND, that since 8-April, I would have a noticeable weaker arm by now?

Your process seems to be limited by your plexus branch and reversible - considering the fact that cortison had restored your strength in one week.
You consider this as false strength recovery, and this is also incredibly strange for me. A week ago you can not resist the pushing force and were clinically weak. Now you could resist this force, your clinical weakness is gone but you consider this as a false recovery...
If we have such different understanding of simple words, how can I help you then?

It's hard for me to explain. At first, when the neuro said that my strength had nothing to do with my muscle regaining strength, it was pure cortisone, I took that as, that if there were any chemical factors contributing to my weakness, that the cortisone took care of that part, but it was not related to how strong my muscle is......if that makes any sense. So this confused me for sure.

[Yuliasir]

There was an inflammation preventing your nerves from proper operation, and cortisone decreased that. So in one week you already could resist the pushing force despite on pain. This is absolutely 100 % good sign.

But of course you will have residual weakness, shakiness etc - here is the job for physiotherapy.

If your weakness would be due to malignant reason, you first of all would not have any benefit from cortison. That's should be clearly understood. You could resist pushing force again. You could not do this a week ago. In ALS people do not regain strength, they only progressively get worse. In case of plexitis, as you remember, process of worsening first stops at a certain level, then it might be reversed to a certain degree.
You already could see that the process had stopped after very short hormonal treatment. So, with gabapentine and physiotherapy you shoud start to see now some slow improvement. Slow - I mean it would be a scale of weeks, not days or hours. I do not have plexitis and I do strenous excercises for fitness 3 times in a week. It took me 8 weeks just to be able to run for 5 minutes without feeling I am dying and I still can not do a single push-up. And I do not have clinical weakness (no process to prenebt my muslces from proper operation) -just did not use them for decades. So, if in my case a slight improvement took 8 weeks of strenous excercises, you should be ready to probably even more slow effect, as your excercises should not be strenous as your goal is not a fitness but resotration.

[Xina535]

Just got out from seeing the neurosurgeon. His opinion:


Neuritis. He said the same thing the neuro did. The herniations are too low to affect the shoulder and deltoid. He said the findings on my MRI should not lead to my arm problems. No indication for surgery, no indication of other shoulder problem. He tested my strength, it was there (full).

He said my neck pain is for sure from the herniations.

He said to continue with physio, exercises and meds. He said it will take a long time to get better. If I don't or the pain gets worse in a few weeks, to see him again.

So I'm dealing with herniations and neuritis. Guys and gals, I really need to have some kind of improvement in my arm. No worsening. I see my normal neuro on Thurs (not the one who diagnosed me with neuritis), to go over all of this with him. Maybe he'll do more tests. ??

So cortisone.....that my strength came back is a good thing. Points away from MND? That would never be able to help a person with MND even slightly?

I am keeping a journal of my symptoms.... Like arm pain, arm twitching, arm weakness....and giving it a number from 1-10. I have an app that makes it easy.

[d4twitch]

Xina,

The simple fact that you have been twitching for 20+ months and are having multiple neurologists tell you you have something that is not MND tends to mean that you very very likely don't have MND. Get the MND out of your mind in my opinion. Easier said than done I know. Is it possible? Anything is possible, but it just isn't likely at this point.

[Xina535]

Hi dtwitch4

thank you. It is hard when you have been twitching and had clean EMGs, then all of sudden have twitching with nerve damage and a dirty EMG. We all rant and rave on here about "twitching + clean EMG = no ALS/MND" .....that's like the motto. I think most people on here always have had clean EMGs.

And the neuros I've seen are not MND specialized. We've also talked about the importance of dealing with MND specialized neuros. I had one neuro give me clean EMGs (a professor) during the time I was actually having full blown neuritis (if this is what this is). I went to him when my symptoms were at their worst, as far as pain, twitching, etc. He diagnosed me with "psychosomatic" when really, I probably should have been put on cortisone back THEN, in JANUARY! My e-mail to him with the other neuro's report and questions is ready to go.

So, I am pretty distrusting here. Also when some docs tell me one thing about my MRI and others a different thing.

I hope this really is neuritis. I feel my twitching is spreading in my arm, more places, more twitching. Making me scared....are my healthy nerves not able to activate my dying/damaged ones? Is there still dying or damage going on?

[Xina535]

Update, the professor neurologist read my email and the neuritis report (from the other neuro) and wants me to come back in for a re-evaluation, for no cost.

[Xina535]

I've been PMing some people, but I wanted to post the different opinions from the neuros on here for everyone.

The professor neuro saw me. And I also saw my normal neurologist last week as well.

All 3 neuros, and the neurosurgeon agree that the herniations in my cervical neck are not the cause of what is going on in my shoulder/deltoid/arm. The herniations at c5/c6 and c6/c7 are too low to affect my deltoid and shoulders. All diagrams I see online show that the deltoid is c5/c6 level, so I don't get it, but I will accept their opinions.

The professor neuro and my normal neurologist told me that the neuro that diagnosed me with Plexus Neuritis is wrong.

Normal neuro said: In plexus neuritis, I would have a limp arm and definite atrophy, which I don't have (something my husband and I wondered about too, we don't see any atrophy and thought the neuro could see something we don't). He took blood for lyme disease (results this week). When I asked him if it is not plexus neuritus, and not related to my herniations, then what is going on? He literally said, "I don't know either." I asked him what he thinks about my abnormal EMG and he said: "Anyone could have those results." He did not look at me, did not examine me, nothing. He said the neuro should have never put me on cortisone. After this lyme test result comes back, I am never going to him again.

Professor neuro: Did a clinical neuro exam (no EMGs or anything), strength is still there. He said the same thing about plexus neuritis and could see that I have no atrophy in my shoulder. He said in 30 years, he's seen maybe 5 cases of this, and I don't have it. He said the EMG of the other neuro showed findings, but it could very well be that something attacked me, but that I have my strength back, that I am getting better. He said the cortisone was a good idea. To keep taking gabapentine, taper off the cortisone as planned and continue physio.

Both the professor neuro and the normal neuro, and now my primary care doctor, think it could be something attacking me or something auto-immune. My primary care doctor is going to re-order the blood tests after the cortisone is out of my system. I will start acupunture with her for my shoulder/arm (since the pain is still very high) and she will also give me an infusion of stuff to help nerves heal.

Meanwhile - going back to twitching - healing or dying:
The arm L. twitching - hot spots - have died down a little. I have felt my heart beat in my arm lots of times, pretty intense. Although it still feel "off" as far as strength and coordination goes, I feel it feels less "off" every day. So perhaps this twitching is positive and indicates healing.