Discussing EMG Decision-Making

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LisaQ.

Well-known member
Hi Jenn,
re: the emg it is totally up to you. If your doctor doesn't think you need it, ideally I think you should listen to him/her, BUT if you are the type who will always wonder unless you do have an emg, then please get it done.

Some docs are more cautious than others and will order an emg right off the bat. That was the case with both of my husband's neuros. In my case (perhaps because I'm an hysterical woman, lol) my neuro insisted that I take my xanax for a month before he would be willing to run any diagnostic testing. :eek: Of course, I refused to take the xanax and lied to him about it because I didn't want to be on medication, but ultimately I had the most complete and thorough diagnostic and clinical work-up of most folks I know. LOL. I saw every specialist (sometimes more than one of each,) had every test, and still only ended up with goofy, silly bfs.

If I had known then what I know now, I would not have put myself through all of that (particularly the lumbar puncture,) but at the time I didn't realize bfs could cause so many symptoms. I thought it only caused twitching, and my twitching was insignificant compared to my weakness and tremors.

Anyway, I've prattled on, but wanted to address the emg issue.

Blessings,
Sue
 
Sue,
I had a CT scan with no dye though. I cannot have MRI because I have a heart defib implant and we cant do those. My blood tests are SLE, Sojogrens, ESR(many times) thyroid (many times), CRP, Metabolic Panel, CPK (many times), Vitamin checks, Hep A,B,C, RA, Lyme check but was on antibiotics at the time and I heard that if you are on meds sometimes it wont show up but my Dr. said no it would of showed. CT Scan without dye on neck and lower back. I do believe I have this but of course like everyone wish I didn't. I am at that stage where I am saying. "why do I have to have this, why do I, I want to be normal again." I don't want to feel sorry for myself I just want my normal life, this stinks. If I just walk around the house and get out of the house go shopping I shake that night. Well if the shaking isnt going to hurt me then I am going to be myself I am going to workout like I use to. Also I have not drank in 6 months since I came down with this because I didnt know what was wrong. Really all I have done for 4 months is sit in my room but not now I am finally doing things for the last month but can I drink I miss going to B-BQ's and going out with friends? Thanks Sue and sorry about all the questions..Jenn
 
Hey Jenn,
I forgot to mention...I was browsing through some of your other posts from when you initially posted here.

Your AICD discharged a bunch of times within a very short time period, and you are wondering if that may have contributed to twitching.

First, I am certainly no expert in cardiac disease, so I would suggest you discuss this question with your cardiologist.

It is curious though, that you described the event as traumatic, and I can only imagine it would be. Plus, (and I'm not asking you to get personal about your heart condition here, just commenting in a general sense,) some of the cardiac diseases for which an AICD would be implanted are auto-immune in nature, and bfs is thought to have an auto-immune origin in some cases as well.

So, I think what I'm saying is that the answer to your question, in a generic and general sense is "yes," the bfs could be attributable to that event, in that stress can trigger symptoms, and auto-immune disorders can sometimes generate more auto-immune disorders.

Anyway, that's not to say this is the case, it could certainly be bfs all on its own. Nonetheless, the outcome is the same. It is benign, and it improves drastically when you manage your anxiety.

Exercise also helps me a great deal.

Blessings,
Sue
 
Hey Jenn,
LOL our posts must have crossed. Are you asking whether you can drink-as in alcohol?

I can't imagine why not, as long as you don't dehydrate yourself and aren't on any meds that wouldn't mix with alcohol. Call your pharmacist if you have any doubt. Are you allowed to drink with your heart condition?

As for exercise, again (and I mentioned this a few times before) this has helped my symptoms more than anything. It helps with the anxiety, plus it will give you a sense of physical strength and well-being.

Again, that is assuming your doctor has allowed you to work-out in the past.

Does this help?
Sue

ps-it may very well be that the initial severity of your bfs symptoms is linked to that stressful event you had. Often, we find that colds, viruses, and stressful situations aggravate our symptoms for a while.
 
I hope it is not Isaac's,everything I read on that is that the Dr.'s do not know what will become of patients with this disease. That is what I always thought I had I have more of Isaac's syndrome then BFS. I have weak wrist, ankles and stiff every morning,even when I stretch I am still always stiff. So if it is Isaac's how do they know we will be ok, that isn't benign? Also I tremor all day long because my muscles are constantly moving or doing something, it is like small shakes inside but i have this all the time. My eyes also tremor in mornings...Does anyone have this too?

I did good on my test by the way, thanks for the prayers...Jenn
 
Me again...I was just reading on Isaac's syndrome and there were pictures of two patients with it and they were saying and showing how the patients fingers and toes were extended downwards and they could not move them. They were also saying how the drug phenytoin showed drastic improvement. Hmmmm..I wonder if it would work for BFS...Is there such a thing as replacing our immune system with new stuff..lol :LOL: ..

I have been on my feet all day today and I am just one big twitch in my calfs as usual...I am thinking about grabbing some popcorn and watching it pop on my body while I curl up and watch a movie.. :p...Jenn
 
not sure if you're still concerned about isaac's, jenn - but i was just off on a bit of a google :oops: - and found this along the way on a medhelp forum - a reply from a neuro to someone with tingling etc:

CCF Neuro[P] MD, RPS
05/06/2000
C22 . Dear Lee:

Thanks for the information. However, Issac's syndrome usually only occurs in people from 20-30 and it never involves sensory findings.

CCF Neuro MD

...thought you might find it reassuring as i think you've had a lot of sensory stuff...
 
wow, it does help me alot,,,,THANK YOU THANK YOU..I was just thinking about this today again and I have my EMG coming up on Monday,,,I am so scared....But thank you sweetie...God Bless you..Jenn
 
Hello everyone,I'm just going through all of the old ratcheting threads and compiling some information. I saw that there was some possible confusion between Isaac's syndrome and BFS that I might be able to clear up.My understanding is this: There are a group of disorders that fall under the umbrella term of "Peripheral Nerve Hyper-excitability." This umbrella term encompasses four distinct disorders: Benign Fasciculation Syndrome, Cramp Fasciculation Syndrome, Isaac's Syndrome, and Morvan's Syndrome.Benign Fasciculation Syndrome and Cramp Fasciculation Syndrome are both conditions of unknown etiology. They include a vast set of sensory and motor symptoms but (excluding symptom related anxiety) do not cause cognitive symptoms like memory loss or confusion. The origin of these conditions may yet prove to be centrally located, but it does not negatively affect the neurons within the brain itself.Isaac's Syndrome and Morvan's Syndrome conditions are both autoimmune diseases and can be readily diagnosed by testing for specific antibodies (antibodies against voltage-gated potassium channels) found in CSF (cerebral spinal fluid). However, this testing is extremely uncommon and only a few laboratories in the world have a comprehensive panel that they can compare against a patients' sample. After a diagnosis has been made for these conditions the prognosis is usually good. Antibodies against the problematic antibodies can be administered intravenously and many patients make full recoveries. In fact, many Morvan's syndrome cases resolve spontaneously without any treatment. You have to realize that these two conditions are very different from BFS and CFS. Although patients with Isaac's syndrome do experience some twitching and neuromyotonia, they also typically experience a great deal of confusion and memory loss that almost mirrors Alzheimer's disease.By the way, here is an interesting aside about Neuromyotonia. Depending on who you ask, you may get different answers as to what this term actually means. Some clinicians and sources that I have read use Isaac's Syndrome and Neuromyotonia interchangeably. Another (and perhaps more precise) group of sources seem to use Neuromyotonia as a term to describe specific myokymic discharges found during an EMG exam.I realize that this may seem like splitting hairs to some people here, however, the biggest problem that I faced when I first realized that I might have BFS was that no one was using precise terminology to describe their symptoms. It took me weeks to even find the word "ratcheting" because apparently this phenomenon has not been given a specific term by the medical community. I can't begin to tell you how many times I've read "cogwheel like motion" when someone is trying to describe muscle ratcheting, and known immediately that everyone else in the thread was going to be immediately confused because this term is already used to describe a very specific symptom of late stage Parkinson's disease.After I finish compiling more information I might have some time to get around to making a sort of BFS glossary. I feel that it would be extremely helpful if we could replace non-specific words with more specific terms wherever possible.
 

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