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Sounds so ambiguous. That is my concern... That there will be too much left to interpretation and my anxiety will get worse. This neuro is connected to the same practice as my regular neuro, so he will have access to it on same system. One of Bostons top hospitals. So my reg neuro feels it is fine to do it through him ( but a different doc will be doing the EMG), but I have seen my reg neuro many times and he has never suggested this... Like I said I think mainly because they didn't see any clinical findings and didn't want to risk false positive and subjective interpretation. But no win have these muscle movements with contraction and the twitching. That has moved from all around my calves to now my knees/ thighs. Driving me nuts around my knee! Better in calves now though. Anyway, everything you mentioned is what makes me nervous about getting this test done and simply having more to worry about...but the EMG may be inevitable at some point anyway given these strange things that are going on...
 
Oh, and also, why don't you like LLMDs? Lyme keeps coming up as a possibility for me... Another very confusing road to travel down...
 
What you describe seems like it is highly highly unlikely you will have an emg that is ambiguous for ALS The point I attempted to make is that there are many things that show up on emgs that do not remotely suggest ALS so even IF ( big if) anything showed they could most likely say no ALS. Als is a disease of denervation and it does not sound like you have symptoms of that I think LLMDs are quacks honestly. you can search here for previous discussions. Lgelb has expressed the same concerns. Is a third neuro doing the emg? If you are at one of the teaching hospitals that may be likely? What hospital/ doc if you want to share? I go to MGH
 
I go to Brigham and they have doc's at south shore hospital (Brigham doc's) and they scheduled a separate doc to do the EMG so yes a third doc. Wish it were all with my reg neuro but even Brigham Boston has separate lab for that so to would be someone different. The problem with the Lyme is that standard doc's won't acknowledge chronic Lyme so you are really only left with LLMDs... I am trying to find a good one that I respect and connect with ... There aren't many out there... I know someone who has sturggled with Lyme and confections for 2 years and he is almost certain that it is what I am dealing with...I know that if I look at the entire time I have been sick, since last July, ALS does not make sense because my symptoms were so different then. It has developed into this weird muscle stuff. The big pattern is what has me thinking Lyme... When I look at these more recent symptoms as isolated symptoms that is when I get worried about ALS. Thank you, Nikki!!
 
You are in good hands with Brigham. If I thought I had some kind of Lyme issue I would be searching for an open minded Infectious disease doctor. I wonder if you could get a recommendation from Columbia?Lyme and Tick-Borne Diseases Research Center

I would also discuss it with my neurologist. Mine would listen with an open mind I am sure.
 
I've mentioned it to all of the doc's I e seen and they just say no not Lyme. Most doc's don't seem to be familiar with symptoms caused by the many confections, like the neuro symptoms. I know an infectious disease doc well and she just looked at standard tests as wel and said must not be. I hear there is a Lyme friendly doc at MGH
 
We need to draw a distinction between "chronic Lyme" that LLMDs push -- Lyme was treated but symptoms that require lifelong abx continue -- from Lyme that was never treated but is suspected based on symptoms, history and labs, and merits a short-term empirical trial of abx.

A good "traditional" infectious disease specialist acknowledges the possibility of the latter, screens for it and delivers a recommendation, and that is what you are talking about.

I don't see anything but an upside to getting an EMG. Even if it doesn't suggest a done-and-dusted diagnosis, it usually shows directions to follow in the differential. What you describe isn't ALS or Lyme as I read it, but you owe it to your obvious anxiety to eliminate those as soon as possible.

Best,
Laurie
 
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Can someone explain fibrillations to me? I have had a buzzing in my right quad on and off and that is the area where I have had some strange muscle movements with contraction. I felt some a few weeks back and then none since until last night and have had quite a few this morning so it is freaking me out. EMG is still scheduled for Thursday but now I am more scared than before about what it could reveal.
 
Fibrillations involve a single muscle fiber and can not be felt by anyone. They are an EMG finding not a symptom. I hear buzzing as a symptom a lot- from people who do not end up having ALS. Frequently mentioned by people who have bfs too
 
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Hi there, my twitching has gotten relentless in the past few days. It's primarily in my calves and feet - the feet is a new location, and I am having a lot of painful cramping with it as well. I have read places that some people do have cramping in ALS, so now with the more frequent twitching and cramping, I am scared again. The twitching for me started right around the time I started Zoloft for my healthy anxiety over all of this. I had some other symptoms as well such as tremors, nausea, and strange muscle weakness - the nausea and muscle weakness went away but the tremors and twitching stuck around so I tapered off of it recently - from 50 to 25 to 12.5, was on 12.5 for 10-11 days, then stopped. I was ok with minimal twitching for a few days and then 2 days ago wham, my feet started twitching constantly and it looked more like fasiculations to me, and my calves started twitching a bunch more and cramping got worse. I still do not have clinical weakness. Yesterday after I went for a run I started having tons of vibrations - the cell phone type - in my legs and lower abdomen. I am so confused about what is going on with my body...but mostly scared right now because I have read some stories of people who said they started with twitching and had cramping pain. ???
 
Anyone have any thoughts on above post? Thank you!!
 
Yes, several of us have looked over your posts and seriously considered them. Several doctors and several people who have experience with ALS have told you to stop going there. It takes time for us to consider your posts and make an answer. This is time we could be helping someone who actually does have the disease.
 
Ok so sorry my fears that I have the disease are real and my symptoms are real and this has been the most helpful
Place for me as I have struggled with this so I just thought I would check here for some support. I am very sorry for taking your time
 
AHURLBUT: I am sure that your fears and your symptoms are real. They're just not indicative of ALS.

My intent is not to insult. I know my posts are rarely sympathetic or emotional supportive, but they are always meant to get a person headed in the right direction.

You never told us the results of your EMG. Everybody, including future readers, would like to know one way or the other.
 
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