Ncv cause further damage?
 

My doc wants to do another emg/ncv. I had one in feb ( Ive had 3 in the last year). I'm not sure why. I sent her a letter ecplaining all my symptoms in an attempt to get her to change her coding for insurance coverage of my skin biopsy. It worked but now she wants another emg.

I'm worried that's it's going to cause more damage to my already physically damaged nerves. What do u guys think? I kind of want to cus I don't think they tested the right parts before but it hurts so mych and I'm worried about worsening my condition. I know it won't change anything so why do it right? Ugh, I want to know though cus I believe it's sfn but also large fiber from the acupuncture.

Tag in another question here.

I'm thinking of having an mrn to show where my nerves are phyßically injured. If I did this, could dr do surgical repair of many nerves? Is it too late ? My injury was 4 months ago

I'm not sure why they would want to do yet another (4th) EMG/NCS, unless there was some indication on any of the first ones that a problem existed...which it didn't seem to be the case.

They know the EMG/NCS cannot detect SFN, but they always start with this test and always seem to put up a fight to do the skin biopsy...which is the ONLY way to assess those small fibers.

With the allodynia you are experiencing now, I have no doubt the test will be quite uncomfortable for you. You should have a discussion about whether this is really necessary when you go on Tuesday.

Unless you have some sort of single injury to the spine somewhere that is causing all this widespread pain, I don't see how you can have a surgical repair of nerves all over your body. I'm not sure I understood your question properly...if this is what you were even asking.

I don't see how it could cause further damage. They are done all the time for many reasons.

Good luck at your spot tomorrow

I don't think it can cause further damage, but it also seems unnecessary. Many people experience a flare up of symptoms, especially the electric shock/ tingling sensations afterwards but that passes.
Haven't your tests all been negative? It seems like you need a skin biopsy now rather than another EMG/NCS.

En bloc , that is what I was asking. There are multiple spots aling my spine that I am thinking would need to be repaired and then hopefully the nerves would regrow aling the rest of the length? I know highly doubtful. Just still getting Moore and more scared as it seems the nerves are damaged all the way to the ends now. Like the pain into scalp has slowly spread sides to my era and lower jaw then radiates out from lower jaw by my ear towards my nose and mouth and not only pain and burning but squeezing too. And that's just one example.

U r right about the ncv not showing much ( carpel tunnel in the wrist they tested and apparently an old injury in the leg they tested they said it was nothing. )
I'm thinking she wants to do it in more areas? I know it would cause pain but would it injure my nerves further? I believe it's not jut sfn bit large fiber too ( from acupuncture)

Ugh..!! I can't lean on my back at all it hurts so much in the needle sites. Is that normal normal? What I going to do???? Even if GABA starts helping I'm still going to be freaking out, I know it. I will constantly worry about how bad it's actually getting and am I harming myslef without realizing it.
It just seems too hard..every minute is a struggle why put myslef through this?
I know people get relief and go on living but what happens if they don't work? Or I get some releif but still not enough? Or the meds stop working? I'm only 31. If I was 60 I would be less concerned bc I wouldn't need meds to last for as many years.

When you say GABA do you mean Gabapentin or the supplement GABA? They are very different. We all assume it is Gabapentin since you have a prescription, but I am confused.

Sorry gaba

Ahh, sorry gabapentin. I don't have a computer and so I use my phone and autocorrect jumps in to much. Also hard to type on this

You know, I had a terrible time with the iPhone auto functions.
You can turn them off in settings...and proof read as you go along line by line. That is what I do now when I use my phone.
Sometimes that autocorrect feature types in a nasty word... and you might miss that it would appear here....very embarrassing.

And I do think typing out gabapentin is a pain as well.
But confusion can be a big problem on a written venue like this.

FYI canagirl I meant to say "good luck at your appt tomorrow" but my I phone auto correct changed "appt" to "spot" lol


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UT, that gave me a chuckle.

I thought "Hmm, never heard of an appointment being called a spot"


I thought I was just getting old.

Jon

I guess an appointment is a "spot" in someone's schedule lol

Hi Canagirl,
Sorry for being late in the game to your posts. Do you mind me asking what injury you had 4 months ago?

Your pain and anxiety seem to cycle around and they feed on each other. Constant pain that it out of control is so scary. I know how scared I was before I got it under control. Have you seen a pain mgmt doctor? My main pain issue is neuropathy and it is controlled by my pain mgmt doc, not a neurologist. I found the neurologist did not look at all my pain issues and I never really found a good neurologist so my primary care doc sent to a pain mgmt doc I have been seeing for 10 yrs now. Please hold onto hope and know there may be some solutions perhaps not yet explored. I also wonder if your employer offers any mental health benefits, often called EAP(Employee Assistance Plan) for critical need counseling. With your pain levels and your crying and yelling, you poor dear, really need someone to talk to frequently until you have found some solutions.

I know you had gone to the ER without much help....do you have a primary care doc who can get you to a pain mgmt doc and a therapist. There are many therapists that deal with pain issues.

Private message me if you want to talk about things on a more personal level.
I don't know where you live...maybe those in your geographic area can offer names of pain mgmt doctors.

My best, Diandra

I'm not sure if I felt worse but I hated it either way. Unfortunately, my new neuro wants to do her own EMG when I had one a few weeks ago :mad:

Honey you have got to calm yourself down :)
 

You have got to calm yourself down before you see the dr tomorrow. You also need to ask for something to calm your nerves down.

This 24/7 worrying is not getting you anywhere and you are only hurting yourself more.

There are many medications and treatments. You have to go slow and let them do one thing at a time to determine what works for you.

Something will work for you...or several things. We're all trying to help you navigate this but you have to listen to what we are all telling you.

I know it's bad now....believe me I've been there and so have all these people that are trying to help you. I'm not pain free now but much better than it was 2 years ago.

There is a light at the end of the tunnel so to speak.

Debi from Georgia

Hi Canagirl,

First a Quote from an earlier Post of yours on this Thread:

Like the pain into scalp has slowly spread sides to my era and lower jaw then radiates out from lower jaw by my ear towards my nose and mouth and not only pain and burning but squeezing too. And that's just one example. Quote

I hate to tell you this, but this sounds like your Trigeminal Nerve is being aggitated. You WILL need urgent help if this progresses.

Secondly: Typing from your phone. On long Posts, type them out into Notepad first, proof them at your leisure, then copy/paste them over into a new Post/Thread Box. It's what I do on phone and tablet, I'm so slow and prone to mistakes.

Finally, like Diandra, above, I missed your initial accident. I know it's repeating, but would you share please? She also has strong points regarding the state of your mental health with all of this. I am the strongest proponent in the fight against Depression, every chronic, severe pain sufferer is at risk - no matter how strong the home support structure.

Dave.

I hope it's not TN! Is there anything you can do about TN? You say I will need urgent help if this progresses...what type of help?

The injury was from acupuncture (I know it's hard to believe...but believe me I know it to be 100% true. I still have the puncture marks on my scalp, neck and back) I have major pain in those areas and the pain radiates outwards from there in lines. then of course all of my skin stings.

I admit wholeheartedly that I am depressed. I don't know how to get out. I start biofeedback/neurotherapy this week. I have seen phsycologists but don't find them helpful at all. I am on the nortriptyline which is an anti-dep. I don't know what else to do. I KNOW I need to calm my mental state desperately, I don't know how. I"ve never experienced anything like this mental state in my life, not even a little. I didn't realize what a charmed life I lead. I was always that person that didn't understand anxiety and depression... I just thought "well, suck it up and move on. What do you mean you can't get out of bed? What's stopping you? Just get up!" Wow, has that ever changed.

It may or may not be TN. I have SFN symptoms in my left eye, jaw, ear and throat. My throat gets sore, I have pain and pressure in my face, my eyes hurts, and I have a vestibular disorder.

When I was not on very much medication, I had a line of hot, wet and warm sensations that traveled up the left side of my face.

Canagirl,
Sorry, I didn't mean to alarm you. This is NOT TN, that is an entirely different, horrendously intense but sporadic pain. You CAN get Neuropathic Facial Pain/Paresthesia which is very painful and long-lasting/permanent.

My Lidocaine Infusions help me, along with anti-convulsants. But don't stress yourself into a new problem, just be aware.

Dave.

Hi all
Just a personal observation about TN - like PN it can vary with individuals. Mine came on suddenly like a severe toothache but was later confirmed as TN. (I nearly had an unnecessary root canal or extraction but thanks to Bryanna on the dental forum I avoided that). My TN now is the least of my problems - it's still there but has moderated to being bearable. A lot of this I put down to the maintenance dose of steroids I'm on for autoimmune condition - that plus the massive dose of steroids I had while in hospital 6 mths ago which temporarily kicked it into touch. So TN does respond temporarily to steroids however you probably only want to go on steroids if you have no other options.

As madisongirl says it could be facial PN and given your other symptoms this would seem most likely.
Keep going canagirl - the 'war' may be long but you can win this battle.

Should i expect anything useful out of an ophthamologist visit on thursday?
 

I have an appt on april 30th, it took me 2 months to find out it was an eye doctor, but thats not the problem.
On feb 3rd, when i went to the pcp welfare, to complain about sudden onset neuropathy(loss of sensation, vibrations, soft touch) and loss of smell. I did initially complain about some eye issue, more like visual snow, or the particulates in my eye fluids is now more pronounced.
Anyways, that whole appt was a bust, as she basically kept pointing my problems to stress,depression, anxiety,or hypochondria, and genetic problem which she had no basis. So i thought when she finally gave me a specilist to see, it took me to find out it was only an eye doctor, and not a neurologist, or a rheumatologist. The reason why i believe she referred an eye doctor, is because she doesnt really believe i have "neuropathy" because i kept saying symptoms kept coming and going, i probably shoulded saying my pins and needles goes away slightly, but not entirely. All these symptoms i can feel right now.
I dont know how much you have loss of smell, but my smell is so diminished, i can only smell fragent, and strong odors, but i cannot pinpoint the source like i used to, i can smell pungent orders, but it was very difficult to discern the smell from other smells. My right nostril seems to be unable to sense any smell at all. This all happened at the same time my neuropathy started.

I felt like it was like a transient stroke, or some kind of very fast onset like "guillan barre"
Even all these symptoms, she only referred me to an eye doctor, knowing that i wounldnt get an answer, so she is banking on the idea, i go back to her and based on her opinions, that i have mental issues. It seems like an easy way to escape from a complex case. I can sympathesize why some people jump to hard to diagnosis disease like ms,als,lyme,,,etc.

My other neuropathy problems, are fasiculations(twitching), myclonic jerks, with some random joint pains

What kind of genetic problem?

I've learned to play it cool at the doctor's office and not come in acting anxious and being too chatty about "what I've studied and read" I simply drop the symptoms on them and let them go to work. If doctors get a whiff of anxiety that's the "hoof beats" they will gravitate towards.


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