update and thoughts? love to hear from you.

Hi guys,
I have been having a lot of problems for 4 months now, twitching, postural tremors, joint pain, shaky limbs, jerks while sleeping and so on. 2 months ago i had a emg study which was a abnormal study and chronic denervation was found on the muscles tested, a follow up emg with more muscle sampling was suggested, 2 days ago i had the follow up emg, i was nervous because of the abnormal study of the first emg, however the neuro that did the curent test 2 days ago told me on the spot it was a clean emg, i was very happy but shocked, did the first person that did my first emg botch the test? is it possible for chronic denervation to disappear? this is what my current emg results read

Emg notes: Quantitative EMG of the right deltoid, triceps and vastus lateralis is normal. Semi quantitative emg of the other muscles is carried out as outlined in the muscle chart and is normal. a single fasciculation is noted in the right deltoid muscle.

Conclusion: This is a NORMAL study. Specifically, there is no current neurophysiological evidence of motor neuron and/ or their axon disease, no evidence of large fibre polyneuropathy and no evidence of myositis

the diagnosis of CFS is not supported because of the lack of fasciculations and of continuous motor unit activity. Repetitive nerve stimulation is more sensitive for the diangnosis of CFS and can be arranged at a later date if clinically indicated.

even tho my first emg was done of the left side and this one was done on my right side with some left arm needle testing as well, would that make a difference? or does this mean i have a clean emg? and cleared of any bad diseases?

any advice as to where to go from here with my symptoms?

Hi TB12,

I just wanted to say, that I am currently in a similar situation like you. It also started 4 months ago, since then , i was in a well known clinic for nerve and psychatric issues for two weeks. Emg, EEG, bloodwork - all clean. BUt my symptoms progessed. Bodywide Twitching increased, Weakness in my limbs got worse, fingers and feet got skinnier, breathing got harder, running like almost impossible, Quadricebs almost vanished. Sleeping during night is not possible anymore, thus i am tired all day. and i allmost forgt to mention: my eyes act like cracy, I mean the pupille is like jumping from wide to super wide - allmost every second. And it stays wide even when i look directly into the sun. Super weird, isnt it? I was wondering if anyone who is looking for some diagnose/ or allready got one experienced the same thing with theire eyes?

So , yesterday, I got my second EMG. The doc pinched only my left side: near the ancle, the front lower leg, and the atrophied part in my upper leg, and my left forearm. He found nothing.

For sure I was happy to here, but as hard as I try to live on, to ignore my sympthoms - it doesnt really work. Cause the twitching and cramps and weakness and bad breathing constantly reminds me that there is somthing wrong.

By, the way, Iam 25, and 5 Months earlier i was doing good. Going skiing, climbing, rowing, lifting weights...

Keep i t short, does anyone have advice what to do next? What should I ask the docs to look for?

All best, D.

TB12, it is possible your previous EMG results were the result of something passing, like a post viral thing.

For both of you, though, ultimately what will be the most helpful is time. Four months isn't very long in neuro disease land. I know this is hard to hear, you have these very real symptoms right now bothering you day in and day out, but a large part of the diagnostic process is a neuro seeing what your symptoms do over the course of a year or more. Neither of you sound like you have ALS, so I'm not sure how you ended up here, but this is a more general neuro truth I'm talking about. There is a relatively limited amount of the human electrical system we can test directly, and indirect signs have to be measured over time.

In the meantime, I very much empathize with your situation. I spent a long time in limbo land myself, and what brought me to being a functioning person was to accept that my condition wasn't going to be treatable until they figured out what it was. So until that happened, I set myself to learning to live with the situation as is. I actually had some of the best moments of my life in that limbo time, and I couldn't have had those moments if I waited. Try to live in today, to really LIVE in today, and let the neuros have time to work things out. At worst, they never do and you've learned to live like this well. At best, you didn't sit around worrying.

tb12 - My situation is somewhat similar to yours. I was fine (except for some calf tightness that I chalked up to scoliosis), running, hiking, playing tennis all last summer. Then I had a reaction to an anti-biotic and all my neuro symptoms started.

I'm a little confused about your 2nd EMG. He found a fasciculation in your right deltoid but goes on to note your "lack of fasciculations". Have you asked him about this apparent contradiction?

For what it's worth, over the span of 3 months, I had FIVE EMGs by 3 different neurologists. One found peripheral neuropathy of my legs and two found perfectly clean lower body EMGs. One found a "dirty" upper body EMG (chronic and active denervation, myopathic recruitment pattern) and 2 months later, another neurologist found a perfectly clean upper body EMG.

I asked Wright about this. He told me that it could mean that I am healing. I also do believe that these EMGs are not the magic end all / be all tests that the genius neurologists would have you think they are.

My personal opinion again: I think that there is a lot of testing bias in EMGs. Meaning, when one neurologist gave me a clinical exam (this was at an ALS clinic that I was referred to by a neurologist) and he saw that I didn't meet the clinical criteria for ALS, he lost interest. Not surprisingly, the EMG that followed a half hour later was perfectly clean. Again, that's my opinion.

I would LOVE to see an undercover TV operation where they send perfectly healthy adults into a clinic and have them fake certain things in a clinical exam, then see how it influences the subsequent EMG. For example, take a professional athlete, have them not be able to walk on their heels or toes, and see if the neurologist finds "something" on the EMG.

I read somewhere that your body can have any damn disease that it wants to. Some of them don't even have names yet. Maybe you and I (and others) fall into that category, or maybe we had some sort of neurological viral reaction, or maybe we are just really early in the beginning stages of something really terrible.

I know the obsession that this thing becomes. I'm not going to tell you to "not focus on it". I am trying to live my life the best I can (still able to work, thank God) but I do spend alot of time on this, just in case it's something treatable. I saw an endocrinologist last week, getting all the hormone type tests this week... My experience has been that YOU have to pursue your diagnosis, because the doctors just order tests and forget about you.

But I'm the resident cynic. In my 7 months (short time, I know), I have found most (not all) doctors to be the enemy. Good luck.

Paul

Hey Paul. It can be frustrating I know. What my report meant was that the lack of twitching on the emg was not enough evidence to diagnose me with CFS as he only found one twitch throughout the whole emg, the dr that did the last emg I just had was really helpful the thorough and told me results on the spot and spent a lot of time with me as opposed to the first guy who did my first emg, he was a nightmare and said that he suggested chronic denervation and I should get another emg done elsewhere. So I'm going to take the good news and move on. Whilst I know the symptoms are terrible, no ones wants Als or any other bad disease and it looks like we don't due to the tests we have, don't you think?