New Member Seeing A Neurologist In 2 Days

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New Member Seeing A Neurologist In 2 Days

Postby Mark on February 25th, 2003, 1:15 pm

Hello everyone.

I just want to start off by thanking everyone who has already been involved with this site. After finding your site this morning, this is the first time in a month that I am feeling some relief. It's been a great help to read about everyone's symptoms and experiences.

I am 45 years old and in good health. At the start of this past December, I developed a strong nerve twitch in my left forearm. It would twitch several times a minute, but I didn't give it much thought, because I figured it was just stress. It lasted for two weeks and then went away for about two weeks over the holidays. About a week into January, it started up again.

After about three or four weeks I started experiencing some new, more frightening symptoms. I was experiencing twitches all over my body. Not all at once (and not consistently), but sporadically. I would have them in my other arm, my thighs, calves, chest, eyes and back (I had one moment when both lat muscles started fluttering). More unnerving was a new vibrating sensation in my arms and occasionally in the back of my neck, and occasionally in my lips. There was no noticable shaking in my arms. They were rock steady to look at, but I could feel what felt like a low level electrical current running through them. Some nights I would go to bed feeling pretty good (with no twitches) and wake up around 5 or 6 o'clock in the morning with my arms buzzing (and/or twitching in my left forearm).

At this point I went to see my doctor. A number of different blood run-ups were done and they were basically normal. My blood sugar level was slightly elevated and one of my creatine levels was slightly up. In the words of the doctor, "as if my muscles were cramping, like if [I] had been on a strenuous run right before taking the blood tests." He felt it was probably stress related, but gave me a referral to see a neurologist, just to be safe and to rule out the nasty possibilities. He was very good at trying not to scare me, but the symptoms (as we all know) are good enough at doing that on their own. My appointment with the neurologist is in three days, but in the meantime I've talked to tons of people and been all over the internet trying to "educate" myself about what was happening to me. After weeks of looking at information about Parkinson's, MS, brain tumors, imune systems attacking muscles, muscular dystrophy and ALS, needless to say, my symptoms were getting worse with worry. As many of you would have expected, my symptoms did not match up in any classic sort of way with any of the diseases until I stumbled across this site (thanks to a doctor's post on a Cleveland Clinic's website mentioning BFS).

I still need to see the neurologist in a few days to rule a lot of things out (I've never been so anxious to get to a doctor's appointment), but feel much more optomistic. I don't have any muscle weakness or atrophy, no loss of coordination and the symptoms (although generally present) come and go. I do have a day a week where I am fairly symptom-free.

Anyway, thanks very much for listening. I would love to get some feedback from you. And thanks again for just being here. It's great to find other people who have had similar experiences.

Wish me luck on Thursday-

Mark
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Mark, mark, mark.... Our symptoms started so similar

Postby reneeintx on February 26th, 2003, 1:01 am

:shock:

Sorry to hear about your symptoms. Here's my story/nightmare.
The first week of December my left eye started twitching. Then it went away for a while. Then near the end of December I started to feel twitching in my right eye, then feet and calves. I'm 39 and in good health also. I do admit I'm a pretty nervous person in addition to being slight worrier over my health.

I went to GP. BTW I'm on .05mg synthroid due to hypothyroidism. Doc tested my blood and someway, somehow my body changed from hypo- to hyperthyroidism. I've been on synthroid a little over a year. She thinks the twitching is due to synthroid dosage. I wouldn't be satisfied with that answer ( she knew I wouldn't). I wanted to see a neuromuscular specialist. Someone that dealsl with als, parkinsons, movement disorders on a regular basis.

Well. to make a long story short.... thanks for listening this far....
The neuro did the emg. Not one twitch(fasiculation) was detected. He said it was perfectly clean. I also had the NVC?(spell) test where they shock your nerves to test how they respond. I guess the only thing I flunked was the brisk reflexes in my knees. He said that can be due to anxiety or synthroid. After the test he tells me he believes my symptoms are due to too much synthroid. I am now on half the doseage. My appt was feb 13, and will see
him again in April for a follow up visit.

I'm still worried due to reading about people getting clean emg's and later being diagnosed with those bad bad diseases. I'm so scared. I hope I'm not scaring you by telling you my worries.

Basically I get twitching all over now. I detest the twitches in the arches. It feels like bugs crawling under my feet, and when this happens my toes move back and forth. My *beep* feet feel like puppets on a string. Have you ever got the popcorn twitches?
I've had those in my calves.. those are just plain freaky :twisted:

Are you going to the doc this thursday feb,27? I hope your visit goes well!

My problem seems to be I believe the doc's for a while then the doubting starts creeping up on me. You know.. what if this.. what if that... Please come back to tell us what he said. One question that keeps alot of people going crazy is "How much time do your symptoms have to be going on before the emg is truely clean?" I've heard people say if you get the emg too soon the bad diseases won't show. I don't know.... really, I've heard so much about this my head is whirling. I live and breath this every day. I try to forget, but it's hard when your feet or whatever are moving and you're not wanting them to.

Sorry for ranting, and complaining.
Health forums are the only safe place to talk about this. If you tell people you know about twitching, they say big deal I twitch sometimes. If they twitched like I do, they wouldn't be so nonchalont about it.

Remember come back and give us an update!

Your twitchy friend from the lone star state.

~~~~GOOD LUCK~~~~

ps. btw have you been to the site http://www.braintalk.org? If you go to this site click on M-Z then scroll down to find the neuromuscular forum. There are lots of twitchers, buzzers, and vibrating people there too. They are very helpful. I post there alot... but under a different name.
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Postby DogBone on February 26th, 2003, 11:41 am

Mark,

First, good luck on your visit tomorrow. My guess is that you will not get an EMG tomorrow, and as a matter of fact, they probably will not give you an EMG at all unless you specifically ask for one. That may not be a bad idea in my opinion - just to put you mind at ease. The great key to ALS is loss of strength. I am not even including atrophy -- because believe me anyone can find "terrible" atrophy in their body if they look hard enough. Simply because muscles have irregularities, they appear to us as atrophies, because we are paranoid. I scared the daylights out of myself 4 months ago finding what I thought was atrophy. Anyway - I am just saying this because most likely you are starting to look you body over for atrophy and I would simply recommend that you NOT even start this. I do not do it anymore and I feel a lot better. So, loss of strength, being the key to ALS. You do not have any loss of strength. That combined with your age, combined with the fact your twitches come and go, make me lean toward your not having ALS. I would suggest asking to get an EMG when you go tommorrow. That will finally put your mind at ease that you do not have ALS. Despite, the garbage that the previous poster said, a clean EMG means no ALS. The accounts that she has read are indeed out there, however, most are bogus internet junk/miscommunication. Heck, if I was feeling rotten today and I just wanted others to suffer a bit I could post that I had 14 normal EMG's before finding out I had ALS. Yes, this is sick, but then I could sit back and laugh at everyone who I scared to death. You cannot trust the net, rely on what the docs say. I have NEVER read of or heard about someone that is twitching who goes to have an EMG while twitching and has an absolutely NORMAL EMG (except fasics - obviously), who goes on to get ALS. WHY, because if they can see the fasciculations and they are complex/polyphasic and not simple, then there goes the normal EMG. So, if the doc sees the fasics during the EMG, count yourself lucky if he says the EMG is normal. Also, any fibrillations, decreased recruitment, increased amplitudes, again there goes the normal EMG. Many people who claim a normal first EMG are really saying that their first EMG was much better than the second. Now, there are a few cases of truly normal EMG's that have gone to ALS, but I have never heard of any of those people who were twitchers, and many neuros, say that if you are twitching then they will not miss ALS if it is there. Most commonly (and this is very rare) normal EMG's with ALS patients are in bulbar onset patients. Severe weakness is fast and unrelenting with bulbar manifesting itself as slurred speech, choking on food, and so forth. According to the Cleveland Clinic, average lifespan of the bulbar patients is just under a year. So, the fact that you are 3 months with none of those symptoms is a good sign and highly indicative that you do not have this onset. It is more common in women anyway.

Anyway - enough rambling, you are in great shape. Just go and put your mind at ease, and I would suggest that you recognize that your mind can be sick just like your body and you may need help from your neurologist to heal you mind. Let him know that and let him know that you need to be assured. That way, he will go the extra mile in his testing so he can rule out ALS for you.

Good luck and let us know how the visit goes.

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Postby TimJA on February 26th, 2003, 2:06 pm

Don't sweat it Mark. BFS Twitchers are a dime a dozen, whereas ALS is (fortunately) extremely rare.
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Postby TimJA on February 26th, 2003, 2:12 pm

Don't sweat it Mark. BFS Twitchers are a dime a dozen, whereas ALS is (fortunately) extremely rare.
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Postby Mark on February 26th, 2003, 8:37 pm

Dogbone, Tim & Renee,

Thanks for the feedback and encouragement. I really appreciate it. Since finding the site two days ago, my twitches and vibrating have toned down considerably and I'm sleeping longer (it's amazing what stress can do). I'm not nearly as preoccupied with my symptoms as I was before then. We'll see how it goes with the neurologist tomorrow -- despite feeling better, I'm sure it'll be a relief to hear her opinion on things. I'll let you know how it goes.

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Postby Davidd on February 26th, 2003, 10:29 pm

Mark--

Welcome to the board...and welcome to the world of twitching and buzzing! Not fun...

Here's the quick scoop. Mostly everyone here has experienced very similar symptoms to the ones that you described. I know that I have and continue to have twitching and buzzing. I've actually had an EMG test done 3 times to ease my worries!

Good luck with your appt tomorrow but I bet you that you will find out tomorrow from your neuro that you have no major disease/illness. Twitching does not cause ALS or any other disease. In fact, twitching in ALS is generally the last stage of the disease where the muscles are dying. You are not experiencing this at all...PLUS you have twitches that move around...which is not the case in ALS.

Does worrying make the twitches worse? People here would say probably.

So if there's nothing wrong with you (which is probably the case), then why are we twitching? This is a great question to which everyone here seeks an answer. Why is it that nerve impulses are being sent to make various muscles twitch? I don't know...but one day I would certainly like to find out. In the mean time, it is important to remember that twitching does not cause anything bad...and in fact, they are called BENIGN twitches for a reason! After all, they are benign.

So, again, good luck at your appt..ask everything that you can...get the tests done to settle your mind and then let us know what happened!

Good luck to ya,

--David
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Results of Visit With Neurologist

Postby Mark on February 27th, 2003, 3:48 pm

Hello all!

The results were as good as could be expected at this point. All tests showed normal results. I've been scheduled for an EMG in early April to fully rule out ALS, but the doctor said she would be stunned if it was ALS. She said she "never says never" until everything is in, but feels very confident that I've got BFS (and not ALS). She did state that although typically muscle weakness or atrophy would accompany or preceed twitching , it doesn't necessarily have to. Not exactly what I wanted to hear, but I can't complain. It was a very good morning! I'll keep you posted as to how things develop. Thanks again.

Mark
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Results of Visit With Neurologist

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