3 Month Twitching - Neuro Follow-up

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kphantom26

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Hi guys. This am I went to the neuro that did my emg in Sept. He said that "you dont have ***". I asked him is it possible that I have it and had the EMG too soon, he said no. He said he has dx *** before with some people who had minimal symptoms and that the EMG was all over the place once done. I told him the twitching has now been everday for 3 months. He said that if I still feel this in Jan, we can do another EMG in case something was missed. I then asked him could I have ALS? He said no. We have ruled out all major NMD. I didnt ask him about what could have been missed but maybe I should have but it sounds like minor things maybe. He said that neuros would not simply miss something like a big disease like this....and that *** usually does not present this way.Soooo anyway, hopefully that will tie me over for now, of course I am still scared however I am going to try to keep in mind that *** does not usually have pains and numbness.He did not however know what to say about the joint cracking but did admit he felt and heard my hip and knees popping out of socket.I am going to go to my Lyme dr on Tues, if I am dx then GREAT ( I know, sounds sick, but at least I can get treatment and know what is wrong) if not then I will try cymbalta or paxil.Just wanted to share this with fellow worriers.....
 
sorry my english is not good enough: does 'the emg was all over' mean that emg in people with early symptoms showed signs everywhere? Come back to see if we missed sth sounds like an bad joke to me....Thanks for your post!!! Laurent
 
Hi kphantom26It sounds like you can stop worrying about ALS. The neuro says you don't have it. As for the cracking sounds in your joints, I have some of that too but not to the extent you do. It doesn't sound like a neuro problem though. Maybe get your gp to refer you orthopedic specialist. Have you had a bone density test?Sandra D
 
Sandra, 'sounds like' is very understated. I meant that a good emg does always point out als. If so we should think about the wording... giving reassurance instead of doubts - if this is true
 
I am still not convinced I am okay till I have another emg. I feel weaker in my left arm but I that could be mind mind playing tricks on me as I still work out the same weight with that arm so that is good news right?I did a dumb thing and went to an ALS board a few days ago which I should not of done.I think the Dr meant he could have missed something on the emg in regards to more minor diseases, I did not even think to ask him as I was almost in tears while talking to him. He did make say those with serious NM can come in w minor symptoms and the emg is all over the place. He also said he could always refer me to a more competent neuro (huh- had no clue what that meant, maybe one that specializes in muscles) Still I cant help but panic, so if my LLMD does not dx me w lyme on Monday I am going to call my other neuro and request a new one. He did tell me 3 times I do not have a major NM disease.I am going to try to mellow out and not go to all the boards so much as it just panicks me more!!!!
 
but the neuros all say clean emg is no als and that it cannot be done too early right!? I had mine 4 weeks ago,after 4 weeks of fascics.Mine from the als-clinic said to me that i dont need another one. What did u read in the als-forum that bothers u?
 
Any good Neuro worth his/her salt will have decided their diagnosis the minute you WALK through the door and say a few WORDS. All this stuff about EMG's clearly not worth the worry ....and all of them clean ....they tell you no ALS and yet people still want to re take them again and again....nuts imo :rolleyes:
 
So I was referred today to a NMD dr that specializes in ALS. Mabye this will ease my mind once and for all. I may try cymbalta in the meantime to see if that helps with any of this--at least the obession!It was a NS that recommended me today. He reviewed my mri of my c spien compression and said it was so slight it had nothing to do w my symptoms. He is the top NS in CA and one of the top 10 in the US. He did say that ALS does not present with pain or other sensory items and that in most cases an EMG will rule out ALS even if someone just has one little twitch- he said they are pretty sensitive machines.....
 
did you already see this nmd-als-specialist or are you going to see him? is the NS, telling about emg, another doctor than the als-specialist or is it him? sorry, don't understand, language-problems......
 
The NS referred me to go see the ALS NMD specialist. He said in most cases, he also I am sure said that to cover his tail as most drs have too--like he said, nothing is IMPOSSIBLE. But again, he said if one has pain, they dont have ALS. I guess I wont be satisfied till I see the specialistYou seem as anxious as me. How long have you been twitching for? Mine has been all over my body but mainly lower body for 3 months every single day every hour for almost 4 months....BTW I read one of your earlier posts that you had gone to a *** forum and you found posts of people who had a clean EMG and was then later dx with ***. This is why we need to stay away from that forum!!!
 
i have it for 2 months now. went to see a neuro at the als-clinic (the only one in switzerland) after 4 weeks of twitching. started in the abdominen and the back and went to the arms and legs. they did the neuro exam and the needle emg in both arms and both legs (4-5 pokes each) and told me after that that i do not have als but bfs. i asked them if they would have spotted als if present, he said yes and that i do not need to do a 2nd emg. i have almost learned to deal with my fascics until i got them 14 days ago in the left foot (inner arch and sole) permanently, nonstop, 24/7, without a break. I wonder if this is normal with bfs.....it freaks me up again....
 
and yes we have to keep away from als-forums....but it is hard. and you know i am a journalist who always looks for the truth....so i am not only freaked up but also on the contradictions that exist.....i think, what maybe should be done in this forum here is a special-halfday with "mr. professor ALS" where all the anxious people here can ask their questions....like a live chat.....otherwise, every info we get here and also in the als-forums are storytellings, not real experts....
 
and i should have asked my neuro more questions.....i am fearing that i had my emg done too early (after 4 weeks of twitching) and if ever they saw a clean emg and people later dx with als, when people just had fascics as their only and first symptoms.....
 
I asked two drs that, if one can get an emg too early, both said no-even those that have the slightest symptoms show abnormality on the emg if they have it. I know how hard it is to believe and stay away from the boards. I went their looking for reassuracne which I got at first until one person emailed me. Now I wish I had not gone! So I will be going to the specialist that my dr referred me too, and will bring a big list of questions! Have you tried meds, or magnesium? The mag has not helped me at all. I am going to start meds next wk if my lyme dr does not dx me as my pains and joint cracking also related to lyme. For me I have to keep in mind all of my issues started with pain- 2 months before the twitches and that pain and numbness are not part of ALS.
 
Laurent, I am 51 years old. My Emg was done 5 days after twitching, it showed fasciculations in both hallux aductor in my feet and some giant mups in my left hallux aductor. The rest of the limbs were ok. He made a clinical and he asured me that I don´t have it. 9 months later I went to an appoinment he did a new clinical and said everithing was ok. He didn`t even need a new emg. Now I am in my 13 months in twitching. In some months I will ask for an appointment just because I want. What I mean is that the most important is the clinicals for them. Read Bart`s post about back from neuro. they don`t need an emg to rule out***
 
but the clinical in early stages in als is not reliable as weakness i have heard often comes later, after the fascics started. Thats why an emg is also needed. Or am i completly wrong? You know as i said i want to know what the truth is on weakness and when it starts....did the poster in the als-Forum say sth that goes against what i have said about fascics and the emg?
 
I am not going to write what this woman told me, there is no need to-she did not have ALS and was just writing to tell me about someone else who had it. What matters to me is what drs are saying. My dr today said that sometimes someone with ALS just has a little twitch, say an eye ( I am just saying that as an example) they get the EMG and the EMG show positive. I dont think a person would have widespread twitches for a long duration without weakness being first. However who knows, I am not a dr but I intend to get clear answers from the specialist. I can say this, I met a woman on a plan about 5 months ago (before my twitching) who told me she lost her husband to ALS, I asked what his symptoms were at first, she said extreme slurred words---ie that would be weakness I believe. I also think if anyone is slurring words, feeling wk etc that can all be cause by major stress and anxiety. I am in your boat and keep seeking reassurance, however, I am seeking a positive and not seeking out the negative hence that is why I will not go back to that board-it will only scare me anyway. So I would suggest you do the same, stop trying to debate what drs are saying and TRY to embrace it-I KNOW its hard, but we are only going to get worse otherwise! What I realized over the past days is if I have it or something else, then that is what is dealt for me in my cards, nothing I can do about it. Not to be negative but most of us will get something someday, cancer, or whatever, some will be cured others wont-its just life and we have no control over our fate. Now stressing about it wont help matters and will make us feel more ill. So we need to do our part, go to the drs and get tested but also trust them and leave it to them to do the worryingSheesh, I need to take my own advise.Just remember *** does not have sensory items, no pain, burning, numbness buzzing.....hold onto that, I am-bring it on pains! But guess what, anxiety does as do other ilnesses-also my dr today (not sure of your age) but said that my age demographic would not be typical for this. Again, he said its not impossible, but...
 
i went to see the als forum you have been posting and saw your q+a and also other very scary posts from people with als that break with all the rules on emg or weakness from the beginning. i shouldn't have been there, i really don't know what to believe anymore....i know, it is all about storytelling and we don't know if the story they are telling is true or not.....but it's scary and leaves a lots of questions n the truth...i think we are both in the same boat.....i feel so fatique in the last time, could sleep 24/7 and now also have the left foot twitch 24/7.
 
Yeah, I am just not going to read anything that is negative anymore I only will read positive reinforcements...Hence I am skimming posts and if I see one thing that points to what my drs have said I will stop reading and may need to take time away from this board.
 

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