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

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.

So I was at my neuro today, and now I am more 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!!!!!
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?

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.