Requesting Advice on Neuro Visit

Highlights Only
X

XinaMae535

Well-known member
Hi all, I am going to see a self pay neuro for my left arm/shoulder/neck and left leg/lower back weakness, twitching and pain. I want to get the most of my visit, of course.I will get a full clinical (never had a real full one before) and a thorough EMG. In physiotherapy, the therapists have found one point around c5/c6 neck, that when they press on it, even gently, I freak out in pain and tears. They are saying this is what is causing my left arm pain, twitching and weakness. There is another point on my lumbar spine, to the left, that is the same as my neck, and small amount of pressure in the spot and I'm in tears from pain. They feel this is what is causing my left leg twitching, pain/hardened muscles and weakness - they said where I have the pain and hardened muscles is the exact pathway of nerves coming from that spot in my lumbar spine. They believe in each spot that it is highly likely facet joint problems.I have no MRI of either areas to determine what is really going on. The orthopedic just took an xray of my cervical spine and found "postural" issues with tight muscles. He said he would have seen any facet joint or other abnormalities on the x-ray, which I (and the physiotherapists) don't buy. They believe he is trying to save money by not ordering a MRI or CT for me (it would come out of his budget).So, back to the neuro and EMG. I've learned it can detect issues coming from the spine, so I assume that the EMG will not be clean. It would or should show something that is going on. So that I don't lose it, can anyone help me determine, in the case of an abnormal EMG, what terms do I want to hear and what I don't want to hear? Example, I am almost sure I do not want to hear "fibrillation" from the neuro's mouth. What about "denervation"? Is that always a bad thing, or can it be many things? Or what about "chronic denervation" or "renervation"?If I am going to have a dirty EMG, I'd like to try to prepare so that I don't freak out over something that could be 1,000 other things. Or is it more complicated than that...example, a dirty reading could be 1,000 things, including MND?Thanks!
 
Merely hearing "fibrillation" or "denervation" isn't automatically bad. The context is what matters. If you have spine narrowing or other nerve compression problems that are manifesting elsewhere in the body then I would expect to hear any or all such words at your EMG. Widespread fibs, denervation, etc. without any apparent nerve compression would be what is concerning.
 
Really?! Like how an MRI would detect, but instead of on a picture, it's "seen" and determined by the waves? Can they tell WHERE the compression is happening, like at which vertebrae?Oh, yea, another thing: aren't there some specific waves (positive sharp?) that almost always indicate MND?
 
Xina,If you go back and look at my posts, you will see the exact terminology used by the Cleveland Clinic for my EMG. I have cervical problems that have caused weakness and atrophy in my left hand. My problem is that the MRI, although it showed disc bulge, stenosis, canal narrowing, etc., was not "serious" enough to warrant surgery so I'm left with dealing with the weakness until it progresses to the point of not being able to use my hand. It's frustrating but that's where I am with this. I hope you have good results.Vince
 
Xina,with full sympathy to your situation I must admit that until your EMG report would not state something like "possible motor neuron degeneration", there would not be a reason to panick specifically. As the fellows mentioned already, mechanical issues could be bad enough to cause weakness, etc. but without progressing to toal disability and death like in MND. So please do not look for EMG details, listen to the overall summary, otherwise you would be mislead and get to another circle of fears.One of my doctors has denervation in her leg. Seen on EMG, yes. Clinical weakness in the leg - seen on clinical exam. Does she has ALS? Nope, she has severe disk problems (two surgeries in fact). Denervation in the long axons is common in people after approx. 25 or so because neural tissue has very slow rate of regeneration and it is prone to natural degeneration - that is why older people are slower in muscular reaction, weaker in hands and legs etc.in other words, listen to the summary your neuro will tell you. he or she knows the job and knows which combination of signals on EMG means mechanical damage and which is from MND.
 
Vince - I read your older post about your EMG results. I see you had an EMG and Nerve Conduction Test. My question is: do I Need a nerve conduction test too? I was thinking just Clinical and EMG. The nerve test would cost extra. I also see that there were two clear sentences that said no MND, so congrats! I do see though, that the EMG had findings, but related to compression. About your compression: Did you or do you have any pain? Also, I find it hard to believe that you are just left to deal with it - and just wait until the weakness gets worse. Are they not trying physiotherapy or traction with you? Injections? I do have pain in my neck. This whole Thing in my left arm started with immense pain in my neck/shoulder that radiated into my arms. The pain has let up, but Comes back, and the twitching is still there, but was worse before. What is constant, is the weak/shakiness.Thank you Gracely. Indeed, I shouldnt care what is found as Long as they can say "findings are not related to MND". BUT I have another, new concern and would like everyone's advice. I got the Name of this doctor from a member on here who has already seen him. She told me he is known for not really experienced in EMGs. Or he performs them poorly. I am waiting to hear more Information from her about what she means, but I, I am going there FOR an EMG specifically. I will put lots of trust into it and the findings. Now I am wondering: Is it worth going?
 
Oh and to add to that - the Website in Germany where doctors are reviewed by patients has this doctor with a 1.7, with 1.0 being the best Review you can have. BUT there are two very bad Reviews, and for "some unknown reason" they were both removed from his Review list.Hmmm??
 
I've asked more about the EMG Thing and this is the Response:he does EMGs - mostly on request. As you know, clinical is more valuable then other things. But in general there are just a few very little good EMG performers. In Bochum (ALS Clinic) the neuro knows this neuro and gives a lot on what he says. But she mentioned that he is not the world best EMG performer. So I would value his general statement more than his EMG. Hope that clarifies...This is also what she (a friend) thinks, I guess. She was at his office quite often. He is good...Whait on what he says.I am going there specifically for an EMG, and paying for it. I am wondering if this is worth it? I see my neuro who gave me my EMG last year on Feb 6 and wonder if I should just wait until then? What would you guys do?
 
Thank you, this is reassuring. It was also partly due to your advice in my other post that I decided to go to a neuro. Ultimately, I need to know what is going on and how to properly treat this. I can hold anything in my left hand steadily. I am on sick leave right now because of the ganglion cyst removal in my right hand, so I figured while I don't have to work, now is the best time to go. I guess I will go and see how I feel about him and only agree to the EMG if I feel comfortable. :unsure:
 
Xina,Yes I have had neck pain for years. I've tried chiropractic and deep tissue massages but to no avail. Cleveland Clinic stated that I could try physical therapy and that I should go to a spine specialist. I went to a neurosurgeon closer to my home who specializes in spine disorders and he told me "most of your problems are degenerative and will only get worse with time". "I would recommend that as long as you still have use of your hand you should put off surgery as long as you can". So, that's where I am right now. The atrophy in my left thenar is very prominent. If I posted a picture it would freak people out. My twitching is constant and body-wide, although more so on my left side. None of my neurologists looked at my MRI, only the radiologist's interpretation. I only had the MRI of my cervical spine and not thoracic or lumbar. The medical bills for me over my nine month journey have been pretty high. At this point, I'm just trying to learn to live with what I have.Best wishes,Vince
 
Forgot to mention, nerve conduction tests usually go hand in hand with the EMG. This would show any conduction blocks in the myotomes in your spine.
 
Ok thanks for the info about the nerve conduction tests. I guess I will go to the neuro and just see what comes of it.I went back and forth about deciding on if I should go to the neuro or if I should wait....back and forth...it gave me even more anxiety thinking about my decision. So with the help of many People on here and in my life, I said "Yep - gonna go do it". And then I find out he's not a good EMG Performer....which I don't get because he is a Professor of neurology at a University. ?? So then I'm back with the anxiety on if I should go or not...but I am going to just stick with my initial decision.But Vince, I can't believe this! You have prominent atrophy and you are just living like this?? Doesn't that mean the muscle wont ever grow back? I am at a loss and I feel for you! I really hope something can be done... :(
 
That goes without saying, I think. We are all thankful we have "easier" things happening to our bodies.....but if the condition is not something fatal, then there should be some sort of treatment or correction plan to get function back, so I am sorry to see Vince in this situation.
 
Just to add to what people are saying here. I would not get too caught up in the terminology used in the EMG but focus more on the result and what the Neuro says.You can read my previous posts to see my situation. 2 years twitching in the left leg (especially calf), 24/7 all day every day for 2 years, never stops. Confirmed left calf atrophy. Confirmed loss of functionality in left toe (it doesn't raise off the ground, but pushes down fine). EMG and MRI showed problems resulting from my spine (stenosis and disc herniation). Basically my spine is a mess and it's likely that over time it's caused the left leg issues. Thankfully though I have no pain and I'm able to try and keep the muscle that remains in the left leg by working out. While the muscle mass has shrunk on my left leg it still has strength to exercise. But it won't grow back again to the original size (probably unless I have an operation).Like Vince.... I'm told my spine condition will probably get worse over time unless I have an operation. However while I'm still running and working out there is no need to operate just because I have a thin left leg and constant twitching.If anyone has issues beyond just basic twitching it's a good thing to get an EMG/MRI but I don't think we should get messed up by the finer details/terminology of the test. The neuro can summarize it for us. That's their job.Stay well everyone!Cheers
 
If it were me, and you were happy with your last neuro, then I would see if you could just wait out the 3 weeks until your next appointment. Serial emgs done by the same operator, same machine type, same set up, etc may give a more accurate comparison of what has been going on with you over the last year, ( since you last saw him/her). Of course an isolated emg data will tell you if there is anything worrisome, but they may not be able to compare it to data done on you in another establishment. I got 2 performed in the same clinic a year apart , and they were able to open my file and compare my nerve conduction speeds, emg findings, and report there was no statistically significant changes over the previoys 12 months etc. When I went to a private clinic, even though I had my NHS results, they didn't do this, different programme or something. Depends how much you want this " then vs now" parameter.I would also cancel if you have any doubts about this neurologist. He may well be fantastic, but remember you can talk yourself into and out of anything, and if you don't trust him, then you will be doubting any good news he gives you before you even get home. If you have little faith in him then you may as well go out to the nearest river and toss your money in and watch it flow away. Wave as it disappears, because in your head you will discredit everything he/she tells you, and you will be back to square one, except with lighter pockets and probably a really *beep* off husband. Just my experience.
 
A mechanical problem affects performance. For example, engine idle problems in cars do not mean the engine is bad or weak, just that other factors are interrupting proper function. Note, I'm not a mechanic.
 
I knew I should not have googled......because when I did, this time I saw this page, for the first time ever.I am so confused! Partly in this article, they are saying "in all stages" "New research shows that pain is common in all stages of ALS, but that it often goes unreported and untreated."but then later says this:"Q: Is pain in ALS associated only with late-stage disease, or do some people experience it in the early or middle stages?A: With the exception of muscle cramps, or fasciculations, which occur early in the ALS disease course, pain is related to more advanced stages of the disease."I am most concerned about this part, because my pain is in my neck and shoulder, and the therapists think I have facet joint damage:"A: There are several types of pain in ALS. Cramps are a typical type of pain, sometimes very severe and localized at the lower extremities, and less frequently at the hands, and the abdomen, and even at the tongue. Articular pain is more often localized at the shoulders. Musculoskeletal pain is also quite common, and occurs in the back, legs, arms, shoulder and neck. It is related to damage to bones, tendons, ligaments and joints."I thought though that joint/tendon/bone damage only occurs in later stages when mobility becomes an issue. ?I can't really believe what I am reading here. All stages?
 
As I understand, pain in ALS is not sensory, like in neuropathy, migraines, shingles and spinal conditions. It mostly affects muscles. Known injuries are excluded or dismissed to result from ALS. Spinal stenosis, for example, causes cramps and pain. All other causes must be ruled out to conclude pain is due to ALS.
 

Users who are viewing this thread

Total: 1 (members: 0, guests: 1)
Back
Top