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Living with Polyneuropathy CIDP, GBS, & CMT

No abnormal EKG/NCS


#1

I had an emg/ncs done today and the doctor who performed it stated that nothing stood out as abnormal. I’m about four weeks in and my legs and arms feel a lot better than they did. However, I still feel weakness, twitching, and tightness the more I use my arms or legs. Additionally, I am real stiff in my neck and chest currently, which was not tested.

I have not spoken to my neurologist about the results yet, but how soon did others get a clean result? I’m wondering if these symptoms persist with a clean MRI or if a different diagnosis needs explored.


#2

If you can use your arms and legs at all after four weeks, you're doing fine. Have patience, and work with your physical therapist and you will come out of this OK.


#3

I had a normal EMG too but still some weakness and twitching. They only tested my legs, once too early( less than a week into this) and then about a month ago. They told me it may take 6 months for my recovery.


#4

Well, from my experience, it will take a few months to get strength back in your arms and legs. However, you should come out of this pretty ok, because I believe many have few problems after GBS.

I had GBS 20 years ago - my legs are weak. I can walk and dance just fine, but it I have to climb onto anything high (like my friends truck) - I notice my legs have very little strength to do that. I am now 69 years old - so it just might be old age too.

Nebretta


#5

I never lost the ability to use my limbs, just decreased strength and endurance. For example, tonight I walked with the dogs 1.5 miles. How bad does damage have to be to produce an abnormal emg/ncs? Did anyone with verified GBS have emg/ncs's done post paralysis that they were normal at a time when you still felt decreased endurance and strength?


#6

Could really use some examples of other peoples emg/ncs. Someone else has suggested myasthenia gravis despite my lack of eye issues. I’m still hoping gbs, but my neurologist officially changed my diagnosis to post viral syndrome. I’m starting to get worried and wonder if I need some more testing.


#7

I had a so called ‘mild case’ as well, so much so that my GP thought I had a pinched nerve when I told him i had pins and needles in my arms and legs. In the beginning the only reason I was taken seriously at all was because I had an elevated CK level in my blood test.

And so after having CT scans to rule out cancer, I was referred to a neurologist to investigate things such as ALS. Finally came out with the GBS diagnosis.

My EMG/NCS was clean too, and all I can tell you having been forewarned that they were looking for evidence of motor neurone damage, is that a clean EMG is an excellent outcome. Be happy that your EMG was clean, and whether GBS or post viral syndrome the treatment options seem pretty much the same (i.e. time, time and more time).

My neurologist told me that in people with ALS, the EMG is never clean if symptoms are present, as the disease starts before the symptoms are apparent (makes sense right?) So if you had a clean EMG, its not possible that it was too early, or something was missed etc so please don’t worry about this.

And even with a clean EMG I was still diagnosed with GBS. (I had a normal MRI too).

The main thing is you say you’re improving - this is the best sign!

Good luck and keep getting better


#8

I am almost 9 years out. I have had normal nerve testing, but the testing itself was such an unpleasant experience that I was sure something would show up. I could hardly walk out of the clinic without assistance though my nervous system seemed to settle down again quickly. I am done with testing.

I still have symptoms, tingling and burning in my legs mostly, but also in my spine to a lesser extent, and the GB seems to have done damage to my enteric nervous system that affects my digestion. I am now on a FODMAP diet which has been beneficial.

My legs are worse at night and I have started to take 100 mg Gabapentin to take the edge off. The burning sensation wakes me. In the morning I often feel like my legs have run a marathon, but some days I feel really normal. I continue to exercise every day including biking and yoga. When I am in motion, I usually feel better. Also my balance has never returned to normal which is very frustrating as I practice it every day and don't seem to make any progress.

Heat usually helps me feel better (in whatever form) including cozy legwarmers.

My MRI showed white lesions of unknown origin, but MS was ruled out.


#9

Thanks Haley and Nojabnold for the responses. Given my symptoms and the onset of them, I still think I had mild GBS. I do feel better than I did, but continue to have set backs as I try to get back to normal life. I also think I may try to get off of neurontin, as I am having pretty bad side effects and I believe it is raising my blood pressure.


#10

If you read my story it was a really mild case also. My main concern now is the muscle twitches in my calves. I have seen that lots of other people had this after their GBS. I get them pretty much non stop in my calves and random other places on my body. My next nerve study is not for 5 more months. Thats a long time to wait and see lol. So any thoughts would be helpful.


#11

I had calf twitches so bad when all this began for me in June 2014. When my symptoms started resolving, I was left with mostly muscle twitches in my calves but then some random ones other places too. With time, they just kept getting less and less but had never gone away. I was concerned about the twitches but my Neurologist said that they were just benign fasciculations that I may have forever now. After I got a sinus infection in February of this year, I noticed that the twitches were getting worse in my calves (more frequent and stronger). I just ignored it but they continued to twitch more. Then I started getting the numbness and weakness that basically hit all of the previous places from before but not as bad. The last few days have been so much better so I am hoping that this little episode is over. They think this was a re-flare and not a recurrence. My previous nerve studies were normal. My Neurologist thinks that sometimes the results don't show with the more milder cases. The twitches actually seem like they are fading some again. It's been right at 9 months. How many twitches do you get in your calves? At the beginning, it felt like thousands for me-some I could see and some not. Now they are more pinpointed. How are yours, TNGBS?


#12

At the beginning I was getting them just in my calves. I was not getting a many as you,but they where nonstop. Then when my legs got weak they got worse. I do get random twitches everywhere else also. Mainly in the calves. My right leg got really sore in the calf and foot. Seemed like the twitching was in hyper drive. That was about two weeks ago. Since then the twitching has slowed down. They are fine ones. I am about 7 weeks into this whole thing. My worst week was about week 5 as far as weakness. I guess I will have to wait the 5 months for the nerve study. You don’t really hear much about twitching in regards to GBS only in ALS. Unless you talk to people who have GBS. Thank you for your answers. Glad you are feeling better.


#13

My worst week for weakness was between 4 and 5 weeks. I had two nerve studies (one too early and then later on) and neither showed. I could not believe it because I was so weak. My Neurologist thinks that sometimes the mild cases don't always show the way more severe cases do. He thinks that the mild cases are under reported and under diagnosed. Hope you continue to feel better too!



#14

I have a EKG and Nerve study in 5 months. Dont think I can wait that long. The muscle twitching is making me nervous. I know Tarhealing you said you dealt with it for a while. I just want to ease my mind of ALS. Which is crazy I know because my inital symptoms were all numbness and tingling in my hands and feet. All of my initial symptoms point away from ALS because they are all leaning toward GBS. Still can't help to worry which I know some of you understand. So I am going to call my Neuro and see if he can get me in earlier then Aug. You said your nerve study came back clean which is awesome. Thats all I want to hear.


#15

Well, if you are 4 weeks in - and seeing good results, I think you are doing quite well. I think mine was caught pretty fast - so I was not at work from mid October until about January 10, I believe. So, in the big picture, I was pretty fortunate. However, I was paralyzed from the neck down in the beginning.

I had GBS about 22 years ago. Now that I am 69, I have some weakness in my legs when I try to get into a high truck or get on a chair to hang something. However, I am attributing my lack of strength in my legs more to old age than GBS.

Through the years I have met several GBS patients - and they come thru it with no problems. I can say the same for me.

Nebretta


#16

I totally understand, TNGBS. I hope that you do not have to wait so long to get your tests. Good luck and think positive.



#17

Hi. I was checking to see how your tests went and how you are doing? How is your twitching? Did you for ally get relief and improved?