Painful EMG test @ the neurologist

Last Friday i had an EMG test scheduled. I announced some apprehension and asked if an anxiety medication would effect the outcome of the test. The nurse told me no but wanted to know what happened. I told her i had excruciating pain the last time I had the test done but that it had been 10+yrs ago. I didnt tell her but its one reason I have avoided neurologists like the plague ever since(despite many neuro symptoms). She told me that I shouldnt worry but it shouldnt be any worse than using my TENS machine. OK, fine, Ativan down hatch, lets roll.

The first part was fine she attached electrodes/pads to my ankle and leg and it wasnt anything to write home about. She then moved them up my leg and each proceeding current got progressively more painful until I had to tell her to stop. I asked her how many more increases we had to go and she said we were barely half-way there!(that spot) guuulp! She told me there was no sense to continue as we had several more spots to go. I told her I was sorry. She said dont worry that many patients who have pain cannot finish the test, so I felt a little better.

Enter the doctor. He gets to poking me w/ some needles and while it was uncomfortable, it was like a massage compared to what the previous currents were doing to me. The doctor told me I did well( I did make beautiful music w/ my legs!)

I am not going to cover all the testing(also incl. MRI/bloodwork) + consult as it is too long and complicated and I need the records in front of me to help explain/ask questions. I plan to disect this bit by bit (10yrs procrastination should be long eneough) and the first part I need help with is this.

I am CONFUSED. End result was the doctor told me I didnt have neuropathy or any neurosarcoidosis. If this is true what is the cause for the torture chamber-like pain inflicted on me during a test that most say is a breeze. I deal w/ pain 24/7/365. I have CTD and sarcoidosis. I am no wuss. What gives. Anyone had problems w/ these tests? What was the outcome or diagnosis?

How can the doctor determine there are no neuro problems just by checking one leg?

How can all my symptoms be attributed to anxiety and bad joints? Numbness in hand and foot, cold extremities, urological difficulties(physically fine after a very invasive and thorough work up, urologist suggested neuro involvement due to abnormal testing such as flow rate, etc), tachycardia(again no physcial reason found after echocardiogram), massive unrelieved headaches(taken just about every OTC and vicodin), fluttering/fast twitching muscles(will NOT stop until they want to), uncontrollable jerking of entire body(not often but incredibly disturbing), cognitive dysfunction(dumber by the day it seems), panic attacks, overwhelmed by stimulation that formerly did not bother me(music, tv, traffic, multiple stimuli), I could go on and on. I am worried.

Any replies would be most welcomed by my sarcky family or my newfound CTD family. Thanks

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Dear KMB,
I have sarcoidosis, and had the same tests a few weeks ago, and i used the same term ~ TORTURE CHAMBER ~ with my doctor. My results showed carpal tunnel syndrome. But my doctor also ordered an MRI of my brain. That did not show thickening of the dura, which apparently is indicative of neuro sarc, but it did show "white areas", which may be indicative of a demylenating disease. So my next test is a lumbar puncture (aka spinal tap) next week. My doctor assured me that this test is a breeze compared to the others. I hope so!
Good luck to you!!!

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I also had an EMG and the shock treatment was awful. I told the doctor I would never ever have it again. He found that I had great weakness in my left leg. (This was before the sarc diagnosis.) I could have told him that because I had been falling for about two years always on the left knee and leg. He then said he suspected an autoimmune disease. The next visit he forgot what he had previously said and gave me meds for restless leg syndrome. They did not work so I quit going to him. Then when I had the knee surgery they found the sarc. I had been quit going to him for about 6 months. He had not helped me and would not even discuss the possibility of an autoimmune disease after saying it himself. I now have a great neurologist at Vanderbilt who listens and remembers.

I recommend you get a second opinion. Take your results with you and tell them you can't do another test but would be willing to do a spinal tap. My spinal tap showed nothing but I had been on prednisone for 6 months before I had it. My doctor said it was not uncommon for the spinal to not show anything with neurosarc. I have brain lessions that he was going to watch. They doubled in one year and I started having pain in my left cheek and left side of the face. My doctor said that it was not feasible to do a biopsy of the brain unless we had to but that he was sure I had neurosarc. He said he wants to stop the brain lessions from increasing or at least slow them down because they can lead to the blood vessels weakening by trying to reroute around the spots.

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Good morning K!
We talked the other day about all these neuropathies.....my emgs were normal. This is the case for nearly all sarc patients with sarc related neuropathy or neurosarc. Ask for a referral to a cardioelectrophysiologist for a qsart. What teaching hospitals are in Jax? I know you have Emery in Atlanta. It's a hike I know but well worth the trip if you get answer. Gainesville Florida at if might do it also. Somewhere with a stellar medical program. Also, email Dr Eric white on here and ask him for help where it can be done. My crappy local neuro STILL hasn't located somewhere I could have it done and I've already completed the test. At this point I'm just waiting to see how long it takes him. Anyway, I had emailed Dr white liking for someplace closer than CC and within 24hours he had info and drs names for me. I still ended up att CC but I'm glad in the end BC it keeps all my Darcy stuff Indonesia location.
Anyway, yeah my engaged and nerve conduction studies were normal, my brain MRI unremarkable, and my neuro here said it was not a real disease anyway. He refused to MRI or even CT my spine even tho the pain was so intense I was/unable to stand more than 10 minutes wiithout obscene amounts ofpain meds. They had an individual answer for every symptom I had and refused to tie them all together. God I pray you find a really competent sarc specialist.

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I had a nerve conduction study two years ago, which proved... nothing. I told my rheumie they would have to catch me first if she ordered another one. She thought I was kidding at first- then I told her to have one done on herself, and see if she can tolerate the excruciating pain. I had to go home and lie on frozen bags of peas to get my nerves to stop firing.

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Do some research on small fiber neurorathy and sarc to see if your symptoms fit. You have many of the same symptoms I do.....with your irregular heart rate and headaches....ask about proprananol....its a beta blocker that will help slow your heart rate and it might help your headaches as well. Its cheap and relatively safe being on the market a long time, just watch your blood pressure doesn't drop too low and cause problems. I just went from 10mg twice a day to 80 mg and my never ending headache finally went away. My heart rate is hovering around 88-95 resting still with a 7 week heart monitor starting tomorrow and an echo to follow.

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I like your picture-CONGA LINE!! I sorry you are having problems w/ the carpel tunnel. Be sure to ask the doctor who does the spinal tap to go over instructions for after you have it. If you try to do too much you can get really bad headache(understatement). I have had two and there wasnt anything I could take that would make it go away. Thank you for your reply and good luck to you.

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You are very brave. The brain lesions sound scary. I wonder if this was what my doctor was talking about. He asked me if I had ever had concussions or anything wrong with my head. I told him no but then I remembered that after I was bit by a dog a few yrs back, in the groin no less, I developed enchephalitis. Anyway doctor said it looked like something from the past but it was not an issue now. This is not going to cut it as an answer for me. Maybe 12-13yrs ago it would have but not now. I looked for any trace of these comments in the consult or other records and didnt find it, what a jerk. I will be thinking about you and those brain lesions and hoping that the prednisone can take care of them for you.

Thats a great idea as well about taking the test scores with me but telling them I couldnt do another test.

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COalmost,
Did they ever conclude if you had the neurosarcoidosis? What was the next step for you after the excrutiating test? I hope you werent swept up under the rug too.

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Dear KMB,

Thank you ~ my photo makes ME smile. That was taken at my sister's 50th birthday party. A happy moment indeed. I shall take your advice and really be careful after the spinal tap. I appreciate your input. Good luck to you, too! Nancy

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Thanks M. I didnt erase those messages either, they were very helpful. I guess I dont feel so bad if most are inconclusive w/ other sarcoid patients. If I dont have neurological dysfunction then pigs can fly. With my SSDI case coming up w/ the ALJudge it would just really help if I could have 1 doctor to put it down on paper though, without the probably, maybe, consistent with, possible, etc. I have seen a few of Dr White'sposts and he sounds like he is definitely on the ball. I guess it CC time. Maybe I could go to the one in FL. Thats a shame about your neuro not being able to find a location. More likely he didnt try or bother. I will ask about the Qsart test. Thanks again for your time and caring.

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You are 100% correct Michelle. Those beta blockers are life savers. I havent tried the propananol. I did start on a beta blocker called metoprolo l(similar medicine) about 2 yrs ago after my doctors kept finding my heart rate really high. One asked if I had run all the way to his office! This medicine made me feel almost human again as I wasnt ready to jump outta my own skin like before. I am glad you are being monitored because tachycardia is really scary, at least it was for me. I was sure I was going to have a heart attack. Hopefully the propranonal is all you will need. I will cross my fingers the echocardiogram comes back ok.

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Only if they don't miss and hit a nerve! I had several spinal taps when I had Meningitous viral and bacterial. The had me curl in a ball while the inserted this huge needle in my back. They missed and hit many times and my body jerked in pain as they told me to stay very still, kinda hard when they kept missing I had 2 like that and the 3rd one was done by the Infectous diease specialist and he was right on the money. Not tring to scare you my first two were done by an ER doctor who does not do them all the time. Hope all goes well :)

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I had an irregular heat beat for years and finally my family Doc put me on Metoprolol 50mg but I still have a migrain 24/7 but my heart rete is better sometimes low. HOPE it works for you I'm going to ask my Dr if I uped it maybe my migrains will go away :) Good Luck with all :)

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Ok, been there done that. Hated the test, thought it was interesting in the way the shocks moved the muscles but truly, what sarkie needs more pain. Result, carpal tunnel both hands. But, I said, what about the MRI that showed lesions, etc, that everyone agreed was not normal. Don't worry about it says the doc.

Saw rheumy, she said that neuro was nuts and sent me to a new one. He agreed something wrong, had to be neuro sarc but lets do a spinal tap. Well, the test was fine, but the aftermath was a disaster. I ended up flat on my back for almost a week due to the horrendous headache I had. Most people are okay if they lie flat for 24 hours after, but nobody told me that. When I got to the test, they told me to lie flat the rest of the day. Didn't show markers for sarc, but then again, spinal tap often does not, but it ruled out other stuff.

Then I took a cognitive test designed for 80 year olds to see if they could match colors, hit the space bar, and a few other stupid things. $500 for a half hour test a kindergartner could pass.

Final diagnosis neuro-sarc. That's my story.

Also, just a gentle reminder, many of us don't like to answer posts which have been shared with the public. Google can be a terrible thing. More responses come when the creator of the discussion clicks "share with members".

Good luck!
Bev

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No, I have fibromyalgia, which causes numbness, burning, tingling- in some patients like me. They found I had no blockages in any of my nerves-- duh, I could have told them that.

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Hi kmb:

I had the EMG- motor nerve conductive test and sense nerve conductive test. The first ones were done by my local Neurologist.(male). In layman's terms..the "doppler" test where he used a metal object and applied pressure to spots on my legs and arms, were torture. Than he applied them to my jaws and if I had false teeth they would have popped out of my head. He sat me up on the table and said he was going to do the needle test. He looked back at me and I had sweat and tears all mingled together running down my face. He said, " I better give you a few minutes break". I said, "just give me a drink of water". I had been trying for 2 years to find out what was wrong so I wasn't going to stop there. He did the needle test that was nothing as bad as the first one. To make a long story short (can read my profile), 3 more months of testing with Lab work that took 6 wks for each one...they said something is wrong, but we don't know what. They sent me to a Neuro Prof at UAB, AL. He had the same test redone (yes, I was scared but game). This time a woman Dr. did the test and it hurt nothing like the first. The results. That Neuro Prof did a deep muscle biopsy in my bicep that showed granulomas. Hense, Neurosarcoidosis in the muscles and nerves. My story also can be found under Rare Desease Day 2011 @ http://bit.ly/g6iP2q. I am #37 under the contents section.

Hope this helps.

Ella/from Alabama

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Geeezee! one more try. http://bit.ly/g6iPZq

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COalmost,
If you have a diagnosis of sarcoidosis I wouldnt be satisfied w/ the fibromyalgia diagnosis until I had at least a second opinion maybe 3. Seems a favorite for doctors who cant figure things out. Not saying it isnt real. I was told I had it too.

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I am sorry you had to go through all that crap. I am pretty sure I am done being turned into an electric eel. I am just niave or shouldnt they just figure you have neurosarcoidosis at some point? I mean if you have a biopsy proven diagnosis and you have every symptom in the book WTHell. Thank you for the link I will be sure to check it out. On your deep muscle biopsy did they have a granuloma show up on a test that they wanted to test? I would hate to think it was just done at random because doing it like that I would be sure to have nothing show up. I am just pissed that the neuro mentions possible autonomic nervous system dysfunction , which fits my symptoms, especially the tachycardia and neuro bladder, to a T, and then releases me w/out so much as a word in my record. I just dont know where they get off. Thank you for your reply.

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Auntbev,
Sounds like luck of the draw to me, however it came about I am glad you got your diagnosis.

Thanks for the "gentle reminder" but I post public sometimes so we can get some exposure/recognition. Even if its just from another fellow sufferer looking for answers. I feel that neurosarcoid definitely needs to get "out there" because people like you and I have had to suffer for far too long. Anyway, thats how I found this place over 2 +yrs ago, searching for answers.
There are so many members who complain about how no one knows anything about sarcoidosis or wants to know so I dont think you can complain if you're not willing to do your part to make it better. I am not saying you are crying here, please do NOT read it that way. Just speaking in generalities. I have seen many posts w/ a high # of replies wanting more exposure for our disease some mentioning TV shows. I have also seen just as many posts trying to sway members to post in members only, many just recently. *If you click on someone's profile it will tell you the date that that member joined. If it is more than a few months or years they most likely know this already. Also, some new members might feel that they did something wrong. Just my take. Thanks you for your reply.

Kristopher

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