New Twitcher - Could use some support

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New Twitcher - Could use some support

Postby physerv24 on June 4th, 2014, 9:12 pm

Hello to all. I can't tell you how much this board has meant to me in the past couple of weeks. I am so appreciative of the personal stories and level of encouragement so many of you give. I'd like to give you my story and would appreciate ANY advice any of you can give me. I'm a male, turning 50 this weekend. My twitching experience started about 7 weeks ago. Though I've never been a stranger to the occasional twitch, they would never last more than a couple of days and were never to the extent that they are now. A little background as to my level of stress; about 3 years ago I was an executive for a physician owned PPO (Preferred Provider Organization). The company was sold and my job was eliminated. I haven't worked since. To say that times are tough is an understatement. My youngest son got married May 10th and my oldest son moved to Denver Colorado about 6 months ago, so my wife and I are empty nesters for the first time in a long time. Back to the twitching.

My twitching started in my left bicep and over about a 10 day period it spread to my left tricep, forearm, pinky and thumb, then to my shoulders, abdomen and pectoral muscles. Like many of you, my twitches range from small electric jolts to huge thumpers. Sometimes they grab and hold then shutter violently for a few seconds before going back to a steady twitch every two to 5 seconds. After 3 weeks of twitching, I went to my PCP who ordered some blood work and after having me take my shirt off and look at my twitching said, "looks like a neurological problem, lets get the blood work back and we'll do a follow up". Well I waited 10 days and after multiple calls to the PCP's office, I heard nothing back from them. Ended up going to the outpatient lab and getting copies of my own blood work (it was all normal). Then I did the unthinkable and began googling my symptoms. I don't have to tell you what a tailspin that put me into. I called one of the physician owners from my former job and he said this about my symptoms, "I only saw one case like that when I was in practice and it turned out to be ***". "You really need to see a neurologist as soon as possible". I was absolutely heartbroken. I did get in to see a neurologist last week. He did a very quick exam, some simple strength tests and had me take my shirt off. He then stated, "Yep, you are certainly twitching". "Have you noticed any weakness or difficulty speaking or swallowing?", to which I replied no. "Hmm", was all he said. I then proceeded to ask him (after reading the many stories on this forum) "doesn't *** usually present with muscle weakness and wasting and the twitching is only the effect of the muscle already dying?" To which he replied, "yes, usually but we'll go ahead an order an EMG". I am scheduled for this on June 12th. When I asked him about BFS, he replied, that usually affects the feet and legs. So I left not feeling much better than when I came in.

The vast majority of my twitching is above the waist. Although, and I don't know why, my legs (thighs, calves, etc.) only twitch when I first awake in the mornings and then quickly subside. I have some jerks in my lower back that are so strong that actually make my upper body turn to the right, or left. I feel like I have no control over my body any longer, or for that matter my mind. I try so hard every day to go about my business and try to forget about this but I just can't. I can't sit still for more than a few minutes. I pace the floor, can't sleep, and am constantly "testing my strength" as many of you have done as well. I live in WV and I have a feeling that not many neurologists have experience with this or the other condition. If I could just have 5 minutes where I didn't feel the twitching, just 5 minutes....but that doesn't happen. When I read how many of you have suffered from this for years and here I am after only 7 weeks experiencing these symptoms, I feel guilty for even posting but I really just need someone to talk to who can understand what I'm feeling.
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Re: New Twitcher - Could use some support

Postby Red Raider on June 5th, 2014, 12:23 am

Physerv24
Hi my name is Houston and I'm from Lubbock TX. Your story sounds like mine and everybody else's on here. Keep your head up your doing all the right things you said you have an EMG on the 12th get it done and make sure they test you thoroughly ok. For example at least three limbs your para spinals, tongue and chin because from MY past experiences you will have doubt and second guess the test results if they are negative you will say "well the didn't test this or they didn't test that" I've been there and done that still am that way a little and I'm sure you will be as well. See there is one thing we all have in common we go to the specialist he say we're fine with BFS and we are good for a week and the twitching gets worse and so do our minds and we are back at square one. It gets better with time as you probably know but have faith in your doctors and only see the best find the best because their you go second guessing yourself well he wasn't good enough or he didn't answer all my questions.

Your twitching, I started out feeling weak ya super scary and then I started twitching in my calves and then it blew up all over. This started in January I had a EMG in Feb and the ALS specialist I see is in Dallas TX and he said everything looked good. They will notice a case of ALS as soon as you walk through their doors they find it more on a clinical exam like reflexes and strenght test if you pass all that before the EMG you should be good but I'm no doctor just my opinion. But now I twitch upper body really bad and lower as well but the good thing he told me is they are everywhere and no weakness. Weakness and bad reflexes are the key but if they are singled out by themselves like for instense I had BRISK JAW JERK AND BILATERAL CROSS ADDUCTORS REFLEXES that were found on my clinical that we're bad both are signs of UMD. But he told me single out it's the way my body is wired keep in mind everybody is different. I seen him last week for a follow up and guess what I still had BRISK JAW JERKS AND BILATERAL CROSS ADDUCTORS IN MY LEGS. And I have stayed the same thank the Heavenly Father I pray to God a lot and helps I've had to seek help through a physic so who knows he has helped and saved me a lot of money from falling off the deep like most folks have.

You are n good hands on this site a lot of knowledge in here just read your symptoms search them and you will see how many people are like you. Don't google anything that's the devil. Sorry this is so long please feel free to hit me back in a PM or on here take God Bless good luck I will say a prayer for you. Think positive my friend.
Houston
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Re: New Twitcher - Could use some support

Postby physerv24 on June 5th, 2014, 8:07 am

Houston,

Thanks so much for the quick reply. I will do what you suggest. I did have a question, if you don't mind, regarding the EMG. If I'm twitching during the EMG, which I know I will be, then won't those twitches show up as fasciculations and therefore produce a dirty EMG? I guess I haven't researched the test enough because I don't really understand it. Anyway, thank you so much for thoughts and prayers and rest assured I will send them your way as well.

Vince
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Re: New Twitcher - Could use some support

Postby bobajojo on June 5th, 2014, 8:51 am

physerv,

I'm assuming that your neuro did a clinical exam? How did that go? I can tell you that both my neurologists have told me that they can suspect a case of ALS even before the patient gets to the room. Because if the patient can shake hands, walk normally to the exam room and answer questions normally, they don't have ALS. I am 41 and I also have nonstop twitching in my upper body. My left bicep has been twitching every second for 18 weeks now. Here are some videos below. I've been diagnosed with BFS by the Mayo Clinic. To say that BFS affects primarily the lower body is just wrong and not true. I even have daily tongue twitching and they aren't concerned about it in the least. So, go get the EMG but since you haven't mentioned anything about NOT being able to do something that you could previously do, I don't think you have anything to worry about. IMO.

Like my neuro always tells me, "Twitching, in the absence of true clinical weakness, is benign. Period."

Regarding your question about the EMG. ABSOLUTELY NOT. Fasciculations on an emg mean nothing unless accompanied by other findings. The Mayo Clinic tested 9 muscles on me. They found excessive fasciculations and insertional activity on 8 of the 9 muscles tested. The EMG was considered 'normal'.

https://www.youtube.com/watch?v=Q60g1l9lB5A
https://www.youtube.com/watch?v=4IpDZs94hUo
https://www.youtube.com/watch?v=F7IEDSDXDIo

-Matt
Over 10 billion twitches since May 2011.
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Re: New Twitcher - Could use some support

Postby physerv24 on June 5th, 2014, 9:50 am

Matt,

Thank you so much for the reply. My exam was so short. I had both a PA and the doc come in and do the same strength tests. Squeeze their fingers, lift each leg while they pushed against it, put my tongue in the side of my cheek while they pushed against it, etc. I had no issues with any of these. Also told him that I had just helped my niece move a couple days previously, lifting couches, televisions, etc. with out any issues. I can walk on my toes, heels, pick up a book with just my thumb on one side and fingers on the other with no issues. I don't regularly do strength training but of course when this started I'm doing push-ups, pull-ups and arm curls (only 20 lb dumbells), 3 sets of 10, with each arm just to see if I can see any weakness. No problems. The only thing the doc questioned me about was when he hit my knee with the rubber hammer by leg did jump pretty hard. He said "have you always had this kind of reflex in your legs"? I told him I didn't know because it had probably been 20 years since a doc had tested my reflexes. I'm a pretty small framed guy; 5 foot 9 and about 145 lbs. I don't have any problems opening jars but I do have an issue with my pinky and ring finger being numb every morning and pain in my wrist and elbow. Occasionally, when I'm grasping something small with my left hand my thumb will draw in towards my palm, like a cramp and I have to pull it back out straight. It feels like a tendon issue because I feel it pulling from under my wrist and under my forearm. Maybe carpal tunnel?? I'll twitch in my eyelids, along the side of my nose and sometimes even in the back of my scalp. Those never seem to last like the ones in the bigger muscles. And, like you and others, it seems that my biceps can twitch in 10 different places in one muscle!

He did say before telling me he would to the EMG, "so your worried you might have ***" and he was smiling when he said that so maybe he's ordering the EMG to ease my mind. I'm not sure but he didn't indicate that he saw anything on the clinical exam. The twitching I have around my elbow drives me crazy and when it goes to the outside of my forearm it makes my pinky constantly twitch to the outside, or pull away from my other fingers. The way my thumbs (both) move seems more like a tremor. I've had that issue for at least 4 years and my PCP always just said "benign tremors".

I've read a lot of your posts and I have to say they really do comfort me when my stress levels go up. I am so appreciative of you taking the time to respond to me.
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Re: New Twitcher - Could use some support

Postby Red Raider on June 5th, 2014, 10:24 am

Hey Vince Matt is on the money my man. My EMG showed twitches but nothing alarming you can have twitches all day but they are benign. True Clinical Weakness just like Matt said dude. They can tell as soon as you enter the door that something is wrong. Please do keep me informed and now until you have your EMG try and keep yourself busy and please don't tell me your a West Virginia fan lol.

Oh Vince you need to quit testing your strenght I know it's hard I still do it too. But it makes it worse trust me your stressed out when you do it causing more twitching it's just not good. Now if your going work out now that is suppose to relieve stress and testing yourself you see what I mean. I can do some push-ups and soon as I'm done my muscles are firing off like cannons. Take care brother. Your reflexes why he asked you if they were so jumpy on here they call they that brisk or very brisk reflexes Neuros go by numbers +1 or +2 or +3 all the way to 5 being the highest. They say normal 23and 4 in which 4 being on the high abnormal but it's normal haha if that makes since. Keep this in mind if they test your reflexes on anything if the other side is the same you are perfectly normal I don't care how brisk they are. Example if they tested your legs, left leg you kicked hard and fast and it was the same on the right then your good. Abnormal reflexes would be on the left leg you kicked hard and on the right you didn't even kick at all and the doctor hit you several times in the reflexes position see what I mean if your reflexes are symmetrical all the way round your good.
Houston
Last edited by Red Raider on June 5th, 2014, 10:40 am, edited 1 time in total.
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Re: New Twitcher - Could use some support

Postby physerv24 on June 5th, 2014, 10:37 am

Houston,

Thanks for the encouragement. And yes, although painful to watch at times, gold and blue forever! Go EERS!
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Re: New Twitcher - Could use some support

Postby Little Lost on June 5th, 2014, 11:40 am

Matt is right fasciculation which are called fasciculation potentials on emg do not render an emg dirty, FP only take on pathological significance if accompanied by other findings in the same muscle they are detected in. Consensus states that on their own they are of little consequence no matter their distribution, frequency or location. Do not over interpret FP, like the clown that I was.

I had FP show up on all my extensive emgs different locations each test, first test detected in hand, second test my hand was totally clear, but single ones detected in calves and upper arm, third test they had all disappeared except upper thigh, but never in tongue or paraspinals. More recent test none were detected anywhere despite extensive twitching. The thing was it was random distribution each test. 3 years in I still twitch, vibrate, still get numb hands mos tnights, yet still find it hard to let the fear go.

Whether fasciculations show up on yours depends on several factors which have all been listed and discussed before on this forum extensively. Time needle is in muscle ( some FP only fire ever few minutes so are missed, twitch location and depth matter. For example fasciculation near the surface of the muscle may be visible at the skin, but ironically the emg may not pick it up even if your muscles are bouncing about in the examination, because needle detects only those deeper in the muscle. I could not believe my triceps thumping away but although the needle moved it was interference and not a FP.

So don't worry too much about the FP being detected or not. Some people prefer them not to be. My neurologist said he likes to dig around and capture at least one if possible so he can check its wave form. Mine were all simple form, though a thing called complex wave pattern fasciculation exist, these are often the type associated with the other pathological changes that would be detected at the same time., so it is extra reassurance if the FP are simple morphology.

As Matt says he had his emg done at Mayo and they had no concerns about the FP.
Hx.
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Re: New Twitcher - Could use some support

Postby nrwtwitcher on June 5th, 2014, 11:53 am

I also had fasciculation potentials in 4 EMGs. All the neuros told me that this means nothing.
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Re: New Twitcher - Could use some support

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