New to Site: Twitching Began After Swallowing Issues

Highlights Only
T

thulani847

Member
Hi all,I am new to this site and fasciculations. My twitching started 6 weeks ago, after I was having perceived? swallowing difficulties and Dr. Google led me to ALS. From there, I discovered fasciculations were also a symptom. I watched and waited with no twitching for two days and then they appeared. At first they were mostly in my hamstrings/quads (more so, left than right) and left lip. Now, the fasciculations are everywhere with some hotspots going as long as a week non-stop. One week into the twitching (3 weeks into swallowing issues), I went to see a Neurologist. She conducted the usual clinical exam, listened to my symptoms and said "You do not have ALS", but you do have anxiety that needs to be treated. She told me she did not want to put me through an EMG only to confirm what she already knows and suggested I see a Psychiatrist to get medication for the anxiety.I was able to glean some reassurance from the appointment and thought my symptoms were improving. But, last week the fasciculations really ramped up moving into my stomach, back, and shoulders. I also have pain/perceived weakness in my left arm and leg (the side where the majority of the twitching takes place). I have always been a bit clumsy, but seem to have noticed I am dropping items more often and my left leg feels "heavy" when I run. The swallowing issues don't appear to have gotten an worse (the Neuro and my GP both said Idiopathic Globus). I realize after reading all of your posts, that these are common BFS complaints and it is highly likely that I am perceiving some of these symptoms as opposed to truly suffering from any type of clinical weakness or muscle loss. But, I am really struggling to keep my fear in check. I know many on this site have never had an EMG and are their doctors are confident in their BFS diagnosis. However, I really think an EMG would give me piece of mind. Being only 6 weeks of twitching, do you think it is too soon for an EMG? For those who have had EMG testing, how soon did you have your testing after the twitching started? I 'd really appreciate your thoughts and advice.
 
I'm pretty new to this, myself. My twitching, from head to toe, started in July. I saw a wonderful new neurologist on Sept. 12th. She was pretty certain, based on my description and a thorough clinical exam, that I have BFS. She said that a brain MRI and EMG were not completely necessary but if I thought that they would bring me peace of mind, it was still certainly reasonable to do them. She also ordered a ton of blood tests! (My internist had already done all of the basic tests.). Oh -- and she started me on a low-dose of Gabapentin.I had the brain MRI yesterday and she called me first thing this morning to tell me that it looked great! She also added that my bloodwork looks good. I asked her if I should still come on Thursday for the EMG. She said, "for sure!". She said it will help to confirm that it's benign fascics. So, I think my answer to you is that it you're going to continue to stress out over this, I would request the EMG for peace of mind. Personally, I think it's worth it if you are the type that will rest easier with good test results.
 
I am wondering if the number of EMGs has increased in the past few years, plus the number of BFS people as well. I had two EMGs done. The second was done I think to get me to calm down. It was done by a med student at a really great hospital. It made me realize how smooth and experienced my 1st neurologist was who performed the 1st EMG.
 
Sorry to ask a question instead of offering an answer..!.. But are you saying that you didn't have any fasciculations until after you read that they were a symptom of ALS? Thanks,GlowGreen.
 
GlowGreen,Yes, I didn't experience any fascicultations for the first two days after reading about them as a symptom (and I watched diligently). Prior to that, I know I've had twitches, but hadn't really paid attention to the frequency. I literally looked up swallowing problems, started obsessing about ALS, read the first chapter of Jenifer Estess' book and waited for the fascicultations to set in. They appeared two days later and have been going like crazy ever since. I realize this probably sets me apart from most on this site who first noticed the fasciculations and then the ALS fear set in. It is also strongly suggestive of an anxiety/somatization based cause for some of us (or else a very scary self-fulfilling prophecy for me).
 
Steph,as a person able practically induce a lot of symptoms, I understand you and symphatise a lot.But on my point of view, if you do not have any warning signs on the clinical exam at neuro office, then you do not need EMG unless there would not be any obvious troubles with your muscles, not prceived but real ones (I mean falling under the rule FAILING NOT FEELING).Some doctors (and my own neuro too) prescribe EMG to perfectly healthy patients only becasye they need that as per protocol or becasue they want to be 100 % covered in case of rares case of rare onset. We all are humans, so we can get errors.but for vast majority of us EMG is a sourse of new endless researches, doubts and concerns of 'whatif' type. People are doubting machines and technicians, they doubt doctors, they are suffering becasue of minor non-malignant changes found on the EMG record etc. etc.If your clinical exam is Ok, then you are safe and should look for anxious mood as a root cause (in your case I think little doubts could be about that)
 
Let me provide my 2 cents on EMG's.....I have had 1 (about 5 weeks into this whole thing). When the flight doc referred me to the neuro, he also requested an EMG/ nerve study be done for my peace of mind. He did not think I needed one and not one doctor since thinks that I need one. Onto my point...the EMG/ nerve conduction study were "completely normal." But then I start asking questions like "was it done too early" etc... and the fears keep coming back, even 11 months into this. There are numerous people here who have had multiple EMG's and their fears are still as bad if not worse as when it all started. So if a doctor (a neuro at that) tells you that you do not need an EMG and that you are fine, should that not be enough? If not, would it make a difference then if the same doctor performs an EMG and says everything is good to go yet your twitching continues or even gets worse? EMG or no EMG, at some point, you have to make the decision and convince yourself that everything is fine, only then will you be able to start conquering your fears.Cheers,Michael
 
Hi Steph, My neuro (a motor neurone disease expert) said it was not necessary to do an EMG as I am showing no neuroligical issues. I think as some have said on here that's fine as these consultants are (hopefully) experts. He said like yours has, if I need to have reassurance I can do one but to be honest, if a problem is shown that isn't even ALS it might send me into a tailspin. For this reason I have gone with what he has advised and am not having one at this time. If the situation changes i will. I am hoping I won't need one.This is the problem with what I have which is health anxiety... You end up finding things you did not need to find. Like my mitral valve prolapse which I most likely have had for ever and a day, or the breast lump that was completely benign, but kept me terrified for several days while the biopsy came back. The problem with the twitching is that its not like a cancer diagnosis - easy to determine yes or know, this is so difficult to diagnose it is horrifying. It's the not knowing and waiting and hoping. Even a clean EMG is not a definite so that's why I am taking my neuos advice and not doing one - for now at least. I asked the same question as you and there are apparently lots if others on here who have not had one either on the advice of their doc. The choice is of course at the end of the day up to you. X
 
So after a couple of sleepless, twitching, muscle pain filled nights I called my neuro last Friday and made an appointment for today. She said she still saw no clinical signs that concerned her, but agreed to do an EMG for my piece of mind. She told me that she would only test two limbs because she really didn't want her colleagues to think she was incompetant or sadistic (her words, not mine) by doing limitless, uncessary testing. I asked if she would do my tongue and she agreed that after she finished my left leg and left arm- the side where my symptoms are much worse- she would do my tongue if I insisted. She also ordered a blood test to check my CKP level, which hadn't been done yet. I am scheduled for the EMG on Friday and she will also have the results of the blood test then. I wish I could say that I felt better, but now I am afraid she will find elevated CKP and something (anything) on the EMG. If you believe in prayer, I could use a few for Friday.
 
Hi Steph - you are on a timeline similar to the one I was on when I started twitching. After 8 weeks I had an EMG on two limbs on the same side (no tongue). All was normal. The doctor who did it looked at me and said basically that he wanted me to walk out of the office and never call him again. I did not have ALS so just get it out of mind now and forever and don't look back. If your doctor tells you all is well but forgets that advice, please take it from mine. Vicki
 
I started in March this year with twitching in my arm and gradually spread through my body with 'hot spots'. I also get pins and needles, warm patches and strange pelvic buzzing thing! I got back from Neurologist with a clinical exam and much the same blood test that i'd already had done. Neuro said nothing serious going on in his opinion and then out of the blue, today, I got an appointment for EMG in 6 weeks. I was ready to put this whole thing to bed and accept twitches etc. but now I can't because even though I know this is standard for some Neurologists he didn't mention he was making the appointment for me. I think if he had mentioned this at the exam then I would have accepted it. Am a worrying for nothing?
 
Janethelen,Guarantee you that your Neuro is just going through the standard motions. EMG tests are nothing very exciting if you have already had a clean clinical exam and consultation with the doctor. He/she is just probably pre-empting your request for the test and it will be a formality, hopefully a way of putting your anxiety to rest and letting you move on. I had an EMG and the doctor knew what the result would say before I went so have faith in what he/she concluded at your consultation.SM
 

Users who are viewing this thread

Total: 1 (members: 0, guests: 1)
Back
Top