emg test results

Tracy, I doubt very seriously if you are 100% recovered. The Drs know there is nothing else they can do for you and say the 100% recovery to make them look great. In other words, they are just blowing smoke. Only you Tracy know how you feel and friends and even family think most of the time there is nothing wrong with us now. Welcome to the world of GBS. When the Drs hear G B S they don’t know a thing about it and as far as they are concerned GBS stands for…Gotta Blow Smoke, cause they don’t know nothing about it.
Tracy, what I am saying is, you gotta be the judge how you feal. You may have to get a new Dr.; like most of us on here have had to do.
Tracy, best of luck to you and prayers for you too.

Drummer

Isn’t funny when your emg is normal that you are normal and fully recovered. I HATE THIS!!!!!! Some or all of us might ever be so called normal. I want my life back as I’ sure many of you do. The norm sometimes for them is that they are delusional. Just tell them to walk a mile, if they can, in oue shoes. xoxoxoxoxxoRoxie

Tracey,

I remember Doc David posting a number of months back, and what he said was ….. (I copied and pasted from his post in April)

[QUOTE]
……. Nerve testing is very innaccurate and non-specific. There is very little relationship between laboratory based conduction tests and real life function. ……
[/QUOTE]

So from that, I would understand that they may very well show the are “back to 100%”, but real life function could be something totally different. I think that most GBSers suffer from some kind of residuals, minor or major residuals like fatigue, pain, tingling, muscle weakenss at times etc, often brought on to a worse degree by stress.

I was diagnosed in August 2006 and had an emg in October that was “normal”. Here it is a year later and my leg muscles still make me feel like a slug on many days. The NCV/emg tests obviously cannot pick up everything. Hang in there — better days ahead!!! 🙂

I believe that the nerves do heal, but in most cases they may reroute, or in other words, they are never really the same as before GBS. That is why we feel fatigue, because those nerves are working harder than the ones we are born with. Only we know how we feel, the doctors have no clue. But congratulations on the great recovery you did make, many need a wheelchair after GBS or CIDP…

Tracey, The doc’s do all they can to stop the progression of GBS. Once they have stopped the progression they know that there is nothing more that they can do for you. They throw Lyrica or Neurontin at you for pain do to any residuals you may have. So in there eyes since they can do no more healing, you are cured. I don’t know if I would call it 100%. Now it’s your turn to live with the residuals of your GBS until you really are cured, if that ever happens. Some people do not recover and others do not recover in full. The doc’s cured me 3 1/2 years ago and I still hold out hope for the day I can say I’m cured. Hang in there, don’t ever give up hope. – John

Tracey,

I believe that nerves heal but it takes MANY months to years to do this. In my case they just rerouted I think. THey can do the emg on me and I have NR responces. My hands work but I have days where they dont function correctly. I dont know why or how my body is working either. I have been in the wheelchair to walking and back to the walker and wheelchair now back to walking with a slight drop foot.

Tracey, Only You know how you feel, your body will tell you when its ready for more intense workouts, play etc. I had an emg/ncv yesterday, my results were an improvement except one area is still sluggish, but that result doesn’t correspond with the way I am still feeling. The test shows that those specifically tested nerves are doing what they should be doing, at the time of testing, someway and somehow they are working at getting the message to the right point. It has taken over 2 years for my f-waves to come back-not perfect, but they are there vs absent. My sensorys are sluggish, getting slightly better as compared to what I was able to feel 2 years ago-not scoring good on the test though. Give your nerves time, don’t get on them.;) I push my body alot, I also pay for it alot, take it from me its not worth listening to others on what you should be able to do, its what your body will allow you to do that matters. Take care.

Tracey, I sent you a private message as I also live in the Houston area and am post GBS from May 2005. I would love to meet you as I have never met anyone in person as yet that has had GBS.

Unlike everyone else who has replied I have never allowed the Neorologist’s here in Texas to run the EMG as I remember what it felt like years ago when I was having issues with another problem. It was the most irritating test and I felt like it would further drain my system to have it. ( I’ve been to 3 different one’s and all they had to offer was to run tests. When I questioned them they conferred that no test would help me heal so I refused to have the EMG).

When I was diagnosed with GBS I was on vacation out of state and the Neoro I had while in the hospital there didn’t want to put me through the test as GBS was confirmed with the spinal tap. She told me that my nerves would be healed when all of my symptoms disappeared. She was awesome and I haven’t found one that I trust as yet.

I am very fortunate that I feel about 95% healed on most days. If I don’t get enough rest I get more symptomatic usually at night. The Houston humidity and heat really get to me if I work out in the yard and I have to really watch the amount of time I spend outside in the heat or I am wiped also.

I do try to get some sort of exercise at least 3 times a week (treadmill, pilates, hand weights) as I find I feel better when I do. I also treat myself to a deep tissue massage at least 1 time a month as I have found that it loosens up my muscles and I notice a big difference when I miss a month.

Take care and I hope we can get together.

I don’t think one is ever cured of GBS. I had it over 30 years ago and although I have functioned normally since then, I have always had problems. My last EMG done in 2004 showed slow nerve conduction in my feet. My neurologist explained that it was probably from the GBS. As we age, our nerves don’t regenerate as fast and those of us who had nerve damage start to have more problems. I also have had weird nerve pains. I had sciatic pain in my leg that lasted about 6 months, then I had an inflamed nerve on top of my foot and recently I have been having a burning, achy discomfort in my upper back. The diagnosis is usually nerve related and unexplained. I believe it has to do with GBS. The bottom line is………none of us can change the fact that we had GBS, but we can embrace each day and be glad for all the things we can do. God Bless!

Boomerbabe, I am too lol, a big 10-4 on not being cured. I think it is just like polio, as I have seen people who were totally paralized and have been that way for 50 years, and know of others with it now who have some bad limp and the built up shoes and with the awful hip malfunctions that makes them look like they don’t have a waist and seem to work and don’t seem to have any pain. It is weird to figure as most of us here have severe pain; , like myself for example. My income tax preparer is the one who has been totally paralized, but still manages to use his poor hands which are bent and curved everyway. It is sad to look at and try to think what this person has had to deal with all his life. 🙁 Take care and God bless us still.

Tracey, Congrtulations. I was also dxed GBS 5/05. Still can’t walk and get residuals–tingling, heavy feet and fatigue. Axons were damaged.

Peggy

Hi Tracy: I was diagnosed in May 2005 also. Been a rough ride and still need a wheelchair most of the time because of pain and leg fatigue as well as other residuals. My neurologist refused to give me the emg once I was out of rehab. He told me it is useful only for diagnosis and then only in conjunction with the spinal tap. He told me it would not show anything about my residuals that would be useful. He also told me there was nothing more he could do for me and said goodbye. I respected his honesty and was fortunate enough to find a really good doctor who helped me control my residuals rather than the other way round. Most important thing about doing that is to listen to your own body and rest when tired and not push past what feels right to do, no matter what anyone else says. I knew I needed the wheelchair before the doctor told me, but didn’t trust myself enough to go against what the neurologist had said-that I should fight my pain and not give into it. I realized when the second doctor gave me permission to use the wheelchair I started to feel better in short order. Walking causes me pain and has hurt the muscles in my legs, so I wish I had trusted myself sooner. Anyway, no test really shows the residuals you face, but you know them better than anyone. Trust what you know. Jeff

Had to find a new nero, since original one stopped taking my insurance. This guy did EMG and nerve condutction test which showed significant nerve damage after 18 months. My question is he insists tht I take Provingle a drug usually prescribed for sleep apnea patients to keep me alert during the day. It keeps me alert but my body is dragging by 5pm anyone else heard of this drug being given to post GBer’s?

patty,

although i have not seen it mentioned in quite a while, yep, some say it helps. your spelling is slightly off & i’m not sure of the correct spelling. blind leading the blind – lol. take care. be well.

gene gbs 8-99
in numbers there is strength

Patty,

Provigil – I do take it, have done so since June 06 – It really helps me a great deal. Tried stopping it and everything fell apart 🙁 .