Plexus Neuritis/Weakness/Twitching/Questions/MND?
 

Hello All, 34, female here. :Wave-Hello:

I am new and was just recently diagnosed with plexus neuritis (shoulder neuralgia amyotrophy, has many names), but the cause is not really understood.

I also have 2 herniations in my C-spine (C5/C6 - C6/C7), which my neuro says are too low to be connected to the level of my arm pain, so he believes I have two separate things. Needlesstosay, I have lots of neck pain.

The EMG of my deltoid was abnormal (increased action potentials, fasciculations, positive waves), and I had clinical weakness in my arm of 4/5. I am terrified of this being MND/ALS.

Arm Symptoms:
Pain in my shoulder and arm, usually in the same areas. Deep, stabbing/pinching pain, that sometimes feels hot/warm. Cortisone therapy now helps just a little with the pain. I just started gabapentin on top of the cortisone...

My arm is totally restless - it's twitching, vibrating, and pulsating (my heart beat thumping). Is this my arm dying or healing? Is it normal in neuropathy to twitch, and also twitch when the muscle is being used?

Weakness - this is what is bothering me and scarying me the most. My left arm shakes when holding things, or when I am trying to do simple exercises (I am in physiotherapy). I know it takes a long time for nerves to heal, but did anyone experience their weakness get worse before it ever got better?

I am very scared about the cause not being known and the weakness and I would like to reach out to others who have neuropathy/neuritis to see if others experience the same fears, same symptoms and for tips on how to cope.

Has anyone experienced ways to help nerves heal sooner - like B vitamin infusions or acupuncture...other things?


Other info:

1. Brain MRI was normal
2. Reflexes are normal (which is weird to me if I have weakness. My neuro said that the deltoid that is weak, does not produce a reflex...)
3. My neuro is ruling out ALS because of the pain, my age and location of weakness (upper arm/shoulder), when usually limb onset ALS is distal (hand/foot), but I am still very uneasy. :(:confused:

Thanks for your time!

My whole body twitches , vibrates and pulsates. I keep thinking there is sonething going with my circulation but dr says no...

thanks - your twitches - do they happen even when you are using the muscles? do you have any weakness (clinical weakness confirmed by a doctor)? do certain things aggravate your twitching (exercises, certain positions)?

the heart beat - pulsating thing is almost as annoying as the twitching. It's like my whole arm and shoulder are thumping with my heart beat.

also - do you have PN as a diagnosis? I was not sure from your profile and I am just getting to know people on here.

The R-lipoic acid and Methyl B12 really help me with my pain. I started from the folks' here recommendation.

mrsD is the expert and there are some stickies for suggestion.

Hope you get better soon.

I had an emg/ncv on one lower arm and one lower leg. One doc told me carpal tunnel on the arm and another told me slight neuropathy on the arm. so I don't know. Plus, it was done before I had any pain. I don't think Ive had a proper emg/ncv because it didn't cover very many areas of my body. I have a skin biopsy scheduled for may 20. I am a 31 year old female.

I also had twitching/cramping as my first symptoms. Then "perceived" weakness. At that time I was convinced I had a MND, but testing and multiple neurological exams has pretty much ruled it out. Later, the weakness seemed to gradually resolve - but then the burning feet, etc. started. Unfortunately, I don't have a diagnosis yet despite the fact that my symptoms certainly seem to match some type of sensory neuropathy.

Have you had an EMG & nerve conduction testing? That is one of the main tests that is used to rule out ALS/MND, and also will identify motor neuropathy.

As for nerve healing, it is slow and logically it can only happen if the underlying cause of the damage is resolved. There are a number of supplements that can aid in this process including B12 and various other B vitamins, alpha lipoic acid, acetyl-L -carnatine, and so on). Check out the Supplements thread as well as the many, many posts on this topic throughout this forum for more info.

Thank you - I will look into the other threads about treatments.

Were you ever diagnosed with clinical weakness from a doctor? I have, with my shoulder.

My EMG was abnormal in my arm. Showed the things that I posted above. The doctor ruled out ALS only because of the sensory and pain issues, my age and the location of weakness (shoulder), but I am so uneasy about this. What were the reason ALS was ruled out for you? Did you have abnormal EMGs?

Thank you and good luck with the biopsy. I wonder - what can they tell from a skin biopsy?

is the pain and weakness in your shoulder and arm on one side only?
I would look into the cervical herniations some more, get another opinion. Also have you looked into TOS, Thoracic Outlet Syndrome? Are you a swimmer, weight lifter or very athletic?

Exasperation
 

I was dx w/ Amyotrophy and I will give encouragement that in a high number of cases, there is an acute phase. Yes I got weaker as I had muscle wasting in the quads, gluteus maximus and siliac muscles. The exasperation for me was that PT, while did no harm, did not improve strength. My strength is returning slowly. More in tune with nerve regen than PT. Try not to worry about things that have not happened yet. Hopefully you are in an acute-phase that will accelerate the timetable. Make sure your b-12 is over 400, excersize to tolerance, get sleep, if you search for Mitochondrial health and do what you know to do, tests will give you a better idea what you are dealing with. I stayed in a panic for many months so I know how answers are important. Patience is always the shortest when the need is the greatest. Good Luck, Ken in Texas.

It is only in my left arm/shoulder. I am seeing a neuro surgeon on Monday and then another neuro on Thursday next week. I hope after these visits, they will know more. I have not looked into TOS...would that cause my symptoms (including weakness and abnormal EMG)?

Not athetic, just average. Especially now, I feel like a big waste (can't do even small exercises).:sob:

Thank you Ken. :hug: I just wrote a bunch of questions...do you mind if I send you a PM instead? My B12 is in the mid 300s, and I will be asking my doctor for vitamin B infusions.

What are thoracic outlet syndrome symptoms and signs?


Symptoms include neck, shoulder, and arm pain, numbness in the fingers, or impaired circulation and flushed sensations to the extremities (causing discoloration). The involved upper extremity can feel weak. Often symptoms are reproduced or worsened when the arm is positioned above the shoulder or extended. Patients can have a wide spectrum of symptoms from mild and intermittent to severe and constant. Pains can extend to the fingers and hands, causing weakness.

For me, ALS was ruled out due to clean EMG, lack of significant clinical weakness, and lack of progression over a period of several months. MS was ruled out due to clean brain and neck MRI's and normal results on somatosensory evoked potentials testing. It was certainly a relief to find out that I did not have have these very serious diseases.

Now, if only I could get a definitive diagnosis of what is wrong with me.......

Ok, hmm, this is possible. I will ask the neuro surgeon on Monday on if he thinks this is possible! I wonder if it can lead to neuropathy/neuritis...

:eek::eek:
I am happy for you, it is a blessing if this could be ruled out....but I have an abnormal EMG with clinical weakness and am scared. Did they tell you that pain rules out ALS/MND (did/do you have pain)? That is what my neuro said to rule it out for me and that is the only string of hope I have right now...my weakness has not improved (yet) since healing takes a long time....so I am in a phase of waiting, will it improve or progress?

I also had a clean SEP and MEP.

Do you have any discoloration in the arm or fingers?

My understanding of some TOS is that it can result from a blood clot in a vein in the shoulder area. When that happens, nerves may be impacted with poor circulation, etc.

So some evaluations involve evaluating the blood vessels in the area. You might think about this aspect too, since you don't lift weights (move furniture or luggage), have an injury, swim too much, or throw balls etc.(sports)

Females on birth control pills can have odd blood clots in strange places, especially if they have a genetic error in the family to favor these. Some get the clots in legs, others, in deep pelvic veins, and some get them in the brain and elsewhere.

Note that I'm obviously not a doctor, so this is just what I learned from various sites: At that time, I had no pain, so it wasn't a factor for me. However, everything I researched at that time said that MND generally does not cause significant pain (or numbness, paresthesias, etc). So, while not definitive from a diagnostic standpoint - the presence of pain or other sensory symptoms tends to point away from MND. (That seems to match up with what your doctor told you.)

Thank you. No discoloration or vessel issues here. I also do not take any birth control. All I know is when my neck pain started up again tonight, so did the pain in my arm. And tingling/prickling in elbow. Its hard to NOT think that my arm us not part of my neck herniations. I will see what the neuro surgeon says on Monday. I will for sure report back.

Thank you. I have heard that too all over the place. I def have pain that only gabapentin can help. Oral Cortisone didn't take it all away, all other meds (Ibuprofen, etcetera) were useless. I posed above, when my neck hurts, there goes my arm pain again. Will see what the neuro surgeon says on Monday. I appreciate everyone's attention and support! I would invite you all over for dinner if I could! :hug::hug:

Just got out from seeing the neurosurgeon. His opinion:


Plexus Neuritis. He said the same thing the neuro did. The herniations at C5/C6 and C6/C7 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 2 neck herniations and neuritis. Guys and gals, I really need to have some kind of improvement in my arm strength. 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. ??

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 on my phone that makes it easy.

Hi, sorry if you addressed this already but did they check your Vit D level? It is important for nerve function but frequently low and in need of supplementation.

I would encourage you not to give up on finding something aggravating your condition. Neuritis has to start somewhere. Think back if you started anything new before this began. Or take 10-14 days off of a lot of things and see if you have improvement. I had a saphenous neuritis above my medial knee for an entire year that was driving me nuts, buzzed all the way up the leg and had fasiculations. My doctors all shrugged and probably thought I was crazy. I thought I had spread of CRPS.

Turns out I was causing it on the recumbent bike at the gym. I only figured it out after taking 10 days off of working out and realizing it was gone. I got out my anatomy book and found there is a fascial canal where my problem was. Ends up people often get repetition strain in that area. I Added activities back in one by one till I figured out the problem and voila, no more saphenous neuritis now! Oddly, the regular bike is not a problem, only the recumbent so even seemingly minor changes in routine CAN be a problem. I know they want you to do PT but I am wondering about taking a break and seeing if things calm down any before starting that....

Hope you feel better soon, Sending Healing Love :hug:

I think I messed up replying to this. Please see blue text above.

Prayers in improvement in your condition. On a bright note it appears there is a clear etiology for your symptoms. Unfortunately I'm in the idiopathic category :(

Maybe 100 years from now there will be new science that will help treat all of us.

Interesting on the lip herpes breakout. Those can be really painful and end up all back in the throat and ear with nervy reference as you know. Was this long ago? Would they consider a round of Valtrex just to see if it helps any?

Well, there is no exact proven link to my neuritis and the heroes outbreak. But, herpes lives in the nervous system, and stays dormant for a long time. Plus I've seen articles about plexus neuritis that mention herpes as a possible cause. I just found it weird that 2 days after that messed up, creepy crawly outbreak across my face into my lip, the shoulder and arm pain started. This was right before Christmas. The pains continued for a few weeks and the weakness as well. At the time, I had no idea what was going on. And the lip herpes went away after a week or so. Haven't had one since....just this plexus neuritis.

I just hope this is neuritis and not something else. I hope at my neuro appt this Thurs that he'll do more tests and give me his opinion.

Confused
 

So I was at my neuro today, and now I am more confused....:confused:

He read the report of the neuro that diagnosed me with plexus neuritis and said "That is not what you have. This is wrong. and with neuritis, you prescribe cortisone right away, not months later. Plexus neuritis looks totally different, the arm is lame...."

I told him the history that it all started in December and I thought it was from my cervical neck. Lots of pain, throbbing, felt like my arm had a fever. And now I am left with twitching, pain, some throbbing, and weakness. That I go to physiotherapy and every time, it feels good and my arm calms down after physio. That on 25-Nov-28 Nov I was in the hospital for a stomach flu, it wiped me out, they tested for all kinds of stuff, nothing was found. Diagnosis = gastroenteritis. Then on 16-Dec, I had a herpes outbreak on my lip, a very terrible one where I felt it crawl across my face. Then around Christmas, my arm and shoulder pain started, and I've felt the weakness since then.

He looked at my labs. My positive ANA and the fact that - get this - my CRP was at 4.3 (where over 5.0 is not good). BUT that was the level AFTER I had taken a dose of cortisone already. So before the cortisone, it was probably higher, right?

So he believes I have something auto-immunue or infectious going on, but he doesn't know what. He thinks THAT is more possible over a plexus neuritis. He wants me to stop taking the cortisone (I am tapering off of it anyway), and keep taking the gabapentine for my pain. He thinks that otherwise, anything could be causing my arm problem, from a shoulder injury to auto-immune to something in my shoulder being inflamed, like tendons or whatever. But isn't neuritis caused by something auto-immune or infectious?


I asked him about my abnormal EMG and he said this, which surprised me "Anything could cause these results." So he didn't seem to take it seriously. ?? How can an abnormal EMG be "anything"?

He took blood for lime disease, since I've never been tested for that. I told him I was never bitten by a tic. ???? I need to call back in the week to find the results.

CONFUSED!!!!!:confused::(
And I go to the 3rd neurologist tomorrow - the professor, and I will tell him all of this and hopefully I will get more clarity.

But I asked this neuro - he knows my fear of ALS - if this could be - and he said no, not with this pain and it being in your shoulder and your strength is normal. So...2 totally different opinions about my arm so far.

Can we please huddle up and let me know what you think of this 2nd neuro's opinion?:grouphug:

So frustrating! I guess on the EMG he just means any number of causes? Abnormal is still abnormal and does mean something.

Neuritis can be neuroinflammatory, auto-immune or mechanical/compressive. I had saphenous neuritis clearly caused by repetitive aggravation at Hunter's Canal caused by the recumbent bike. It was a bear figuring that out...

I found this info about Parsonage Turner Syndrome today while getting a link for nerve injury. I only clicked on it because I'd never heard of it but I immediately thought of you. Interesting about the viral thing.

http://nerve.wustl.edu/nd_parsonage.php

I hope third time is a charm! Maybe ask about the Parsonage Turner business...

Thank you, yes I found out about that syndrome....this plexus neuritis has so many names and I guess depending on the cause, it will have a different name. I will see what the neuro says tomorrow. I have some new strange symptoms today. I will post a new thread about it.

After reading this thread, I really do think some antiviral for a while may help. In the old days we had a poster on our old forum at another location, who had terrible rib pain...but no rash.
I suggested to her, and gave her links back then (over a decade now), to demand an antiviral, and she finally got Famvir then, and her pain dissipated with time with that treatment.

Today it would most likely be Valtrex. So the herpes virus can be a real trouble maker, hard to diagnose without blood work (titres may help the doctor decide), and since they are only taught minimal symptoms for herpes they don't understand the other less common presentations. I had a weird shingles down my right arm. Looked and behaved like shingles but in the wrong place etc.--an unusual presentation. But my blood work for the antibodies was sky high so the diagnosis was clear.

Lidoderm (lidocaine) also is a good treatment, so once you know you have those elevated titres, you could get the patches and wear them along the spine where those ganglia reside.

At this point it is worth a try... you've had this long enough, IMO.

Also for now, start taking 2 -3 grams of l-lysine daily in divided doses. This can put the herpes virus into a dormant state. (herpes uses arginine from the diet to replicate--and lysine blocks this activity).

There is another virus that can cause confusing symptoms...it is called Parvo 19 virus and can be tested for. You might want to suggest this also to your doctors.

Thank you - I will bring this up to my neuro tomorrow. I appreciate the tips, especially now so that I can discuss with my doctor.:hug:

this is nuts!
 

So, the professor just did a normal neuro strength, sensitivity and reflex test. All normal. He said he does not believe I have the plexus neuritis, like the neuro yesterday said. He said the same thing, that I would have had a limp arm and definite shoulder and arm atrophy, even after just a few days after the onset of pain and lameness. He said what my husband and I said, that we don't see any atrophy in my shoulder/arm at all. So he thinks I have or had something infected/inflamed and the cortisone was not a bad idea. He said to keep taking it and tapering it off, together with the gabapentine. And keep up physio. I told him my arm feels better in general, only, I have a persistent twitch in my forearm/wrist, under by my pinky side. He said that that is the same nerve path that comes from the plexus area. He said that if your arm is feeling better then this twitching is not harmful.

So I guess the I have something that just needs time to heal, and twitching is part of the process. ??? I can't believe 3 neuros and no one can give me a real answer as to what happened to me and what is still happening. :hissyfit::confused::mad:

Today though, is an exception, I have so much pain in my shoulder and going into my upper arm, I can't really move or touch it. I did fall asleep on the couch last night in a weird position, so maybe that's why. I took 300m gabapentine and it is doing nothing for this pain today. I go to physiotherapy at 1:30-2pm my time, so I hope for some relief there.

Maybe I do have Lyme? I talked to my mom last night and said, "he took blood for lyme, but I've never been bitten by a tic!" and she said "OH YES YOU HAVE!! When you were little, I had to remove a fat tick from under your arm..." - so, great! Will get the results next week.

I will talk to my primary care doctor next week about anti-viral and vitamin infusions, etc.

Although you have gotten some mixed opinions on the diagnosis (which I know is frustrating), it seems like the doctors had relatively good news for you. :)

Unfortunately, the more I read and hear, the more apparent it is that these neurological diseases often remain a mystery - even to the experts in the field.

Hopefully, you can now concentrate on finding and treating the cause of your arm problem - and worry less about some other larger issue. Hopefully your body will take care of itself and heal with time. Be sure to maintain a good diet and maybe some basic supplements for nerve health. That may help your body get the "upper hand" in its battle to heal.

I'm pulling for you !!!