I know many of you have had this test can anyone tell me what to expect? Pain? Discomfort? ??? Thank you so much!
Don't you worry Tina. It's not painful. It's close to discomfort, but that depends on how you are feeling at that moment. You can stress yourself you know. So just take it easy and all will go well, I promise. Just a few tiny electrical shocks in the legs, nothing for you to worry about, okay.
It depends on the person.. I was told that children make less fuss than me!
I hope all goes well for you .. try and relax. xx
Hey, Tina, I do not respond to these things very often, only if I feel I can help.
My wife had this test and had me worried sick! She said she had really cried and that it was terrible. I was surprised that it was not so bad. It was uncomfortable but not enough to bring me to tears. Go in with the attitude that it is no big deal. Honestly, your fear and expectations are far worse than the actual test.
What they did for mine involved more than the legs. In fact, the most unpleasant part for me were the back side of the forearm. They place small needles into the muscle and then you have to move the muscle. The insertion of the needles was not as painful as the moving the muscle with the needles in there. Kind of an achy feeling. Pain is really even too strong of a word.They then measure the amount of "signal" that your muscle is getting from your brain. I am not the kind of guy that goes to the dentist and asks for no numbing, those people are crazy! So I am no trooper against pain. Really though, the anticipation and worry is worse than the actual test.-Randall
Thank you for you fast and reassuring responses!!! I have a very high pain threshold so I feel better after reading your responses that I will be fine. It sounds terrible but like Elle said I think I’m stressing myself out.
I have no feeling in my toes, or finger tips. And pins and needles feeling in the top of my head, arms from elbow down, and legs from just above the knee down. So am I right in assuming I probably won’t feel much anyway?
My EMG began in my hands and legs - just slight discomfort. BUT then, the neurologist continued up my back and shoulder blades. I have Trigeminal Neuralgia (horrible electric shock pain though my face, eye and teeth) and cervical back nerve blocks for occipital nerve for neck pain. An EMG is right up there. I screamed and cried in pain, so much that I vowed NEVER to have it again. They won’t give you anything for pain or anxiety beforehand. I’m not a lightweight relative to pain thresholds or tests. (I fell asleep during a root canal.) But, an EMG tells little re Ataxia. They are measuring electrical nerve conductivity. Unless the medical reason is critical for your individual issues and fully explained to you, I just would be wary. I’m am neither negative nor pessimistic in this journey. Attitude is everything.
Some discomfort but not at all intolerable.
TinaD said:
Thank you for you fast and reassuring responses!!! I have a very high pain threshold so I feel better after reading your responses that I will be fine. It sounds terrible but like Elle said I think I'm stressing myself out.
I have no feeling in my toes, or finger tips. And pins and needles feeling in the top of my head, arms from elbow down, and legs from just above the knee down. So am I right in assuming I probably won't feel much anyway?Sounds to me like you should not worry at all about the test. I would be more worried that they could give me some relief no matter how they found out what they needed to do.My legs go numb and begin not responding to my brain at about7/10ths of a mile. It really makes you realize how much you cannot do. Unfortunately, I have the ataxia but also pretty bad spine damage. You need to find out what is going on. If that is your picture, you look too young to have symptoms from ataxia so severe. I would be more inclined to think your nerves, probably in your neck and the rest of your spine are compromised somehow. Your symptoms sound worse than mine! I get some shocks and burning/tingling sensations everywhere but more in my legs and feet. Sounds like you are hurting or having symptoms all over. And yes, you are correct, you probably will not feel too much anyway. Let us all know how your appointment went and even more importantly, the information they get, whenever you get that.-Randall
Heltup said:
TinaD said:Thank you for you fast and reassuring responses!!! I have a very high pain threshold so I feel better after reading your responses that I will be fine. It sounds terrible but like Elle said I think I'm stressing myself out.
I have no feeling in my toes, or finger tips. And pins and needles feeling in the top of my head, arms from elbow down, and legs from just above the knee down. So am I right in assuming I probably won't feel much anyway?Sounds to me like you should not worry at all about the test. I would be more worried that they could give me some relief no matter how they found out what they needed to do.My legs go numb and begin not responding to my brain at about7/10ths of a mile. It really makes you realize how much you cannot do. Unfortunately, I have the ataxia but also pretty bad spine damage. You need to find out what is going on. If that is your picture, you look too young to have symptoms from ataxia so severe. I would be more inclined to think your nerves, probably in your neck and the rest of your spine are compromised somehow. Your symptoms sound worse than mine! I get some shocks and burning/tingling sensations everywhere but more in my legs and feet. Sounds like you are hurting or having symptoms all over. And yes, you are correct, you probably will not feel too much anyway. Let us all know how your appointment went and even more importantly, the information they get, whenever you get that.-Randall
Strange! I must have done something wrong. I hope you see my comment. It lumped them together like they were added to what you said instead of as a response-Randall.
I was looking at your page and I must say this to everyone listen/reading. You mentioned "sugar" as a trigger for symptoms. I am eating a very specific diet and I feel it has helped very much. I am doing the immune protocol of the Paleo diet. I LOVE sugar but I cannot consume it either. White (refined) sugar is extremely inflammatory even on a cellular level.This diet deals with so much that is inflammatory. It can be done and be done in a very boring way but my wife,bless her, she cooks and slaves to do it in such a way that it is so easy. Meals are never boring or tasteless . She has been shopping (expensive) and cooking (time consuming) + (Labor intensive) and I go along for the ride. I was very athletic, in incredible shape. I was a physical trainer for over twenty years. I have lost weight without trying, so has she. The diet has helped her in many ways as well. Still, it takes a lot with making and consuming bone broth and making meals, grinding meat (all organic, beef is grass fed) yet she enjoys cooking. If you can it would help your mental attitude and your ataxia. Mine is inherited too so I know there is no stopping progression.
I also noticed that you have many cramps, especially towards bedtime. Make sure you are getting enough hydration, that you are drinking enough water. Also, try drinking a cup of coconut water every day. Coconut water hydrates the body about three times faster than water! Also, did you know that they have saved lives by injecting coconut water directly into the bloodstream? Yes! Also, now I have given this advice to athletes who had leg cramps at night. I do not KNOW if this will help or not. Drink some tonic water. Tonic water has quinine in it. It is also available in tablet form over the counter. Try that and either you, or your husband if you have one or a caretaker, rub your legs. A friction massage will stimulate blood flow and might very well help. Also, slippers or heavy socks. Keep your legs and feet warm. I know cold affects me more now with the ataxia. Cold will induce cramping in your feet and legs. Maybe just a few heel raises, where your toes are on a step and you raise and lower your heels, slowly and controlled. Some squats, hold onto a wall or a rail or something. Just get a few, enough to encourage blood flow.-Randall
I agree that it is no big deal. Just a few mild shocks, My problem was and is that I did not see, or hear, any report about findings. I am just as uninformed as ever. My take : a waste of time, but no harm or discomfort to speak of.----Silky
Dear Tina D, No worries, as I have a high tolerance to pain and you mentioned you do also. The test for me was just a bit uncomfortable, but NOT painful. Just try to relax and I'm sure you'll do fine! My best to you..., ;o)
Thank you for all your responses. I feel better about the test and will hope for the best.
Helton, thank you for all the tips! I just turned 42 and have SCA3 Machado Joseph Disease. I have been symptomatic for over 6 years it is progressive and the last 6-8 months have gotten much worse. Typically with SCA3 the more repeats on the gene the earlier you get it, the more severe it is. The Children and Teens who get it suffer so badly it’s heart breaking.
Like you I also follow a strict diet extremely low sugar- I eat vegetables, protein, fresh herbs, hard cheese, butter, and cream only. This has worked well for me for the last 5 years. I drink tons of water more than half my body weight in ounces each day. I take lots of vitamins and have just started adding magnesium to help with the muscle cramps. And will definitely try adding the coconut water. Cold bothers me very much too so lots of warm layers here in Boston! I really appreciate how much time you spent on responding and all your great tips.
I have never been one for support groups or online chat but am very grateful I have all of you!
I got to this late but I'll comment any way. I found this extremely annoying like a bunch of mosquitos were biting me. I also have two tattoos which were not painful and the one like the EMG the feeling was annoying. I thank all who post on this board. Even if the subject doesn't apply to my symptoms I still find it enlightening.
SINGcerely, Gramma Karen
I am too late to reassure you, but others did. I found it quite uncomfortable, but bearable. I'm not sue how much was gained, as I had a diagnosis. I hope your experience was not too uncomfortable. Let us know.
Thank you all! I had the test and it was uncomfortable but not painful. My Dr will have the results in a few days. I was certainly wiped out from getting around the city - imagine I used to think the cobblestone sidewalks were charming! Haha
Glad it went well for you :-)
Happy to hear you could 'endure' it Tina. Like I said, a slight discomfort:) But no sense in giving you the shivers before the test, right. So good girl, I'm proud of you.