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.