New-HI All-My story (long).

This forum is for posting your personal experiences with BFS: symptoms, doctor visits, fears, etc.

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New-HI All-My story (long).

Postby mike3456 on September 21st, 2004, 4:04 pm

Hi all,

My name is Mike. I'm 35. I've been under stress for the past 1.5 years (sometimes extreme), but otherwise I've been pretty healthy physically. I seem to visit my doctor every few months with various complaints and I'm also seeing a therapist. I've had anxiety and a few panic attacks recently. I've been taking Valium as needed for sleep problems. Much of my worry centers around health, and that pattern goes way back, but is worse these days (probably because I'm getting "older"). I'm a "leg bouncer" (right-leg mostly), head-scratcher as far as nervous habits go.

I started getting all-over twitches about a month ago. Of course, I obsessed about them, because I never had several occurring per day at different locations on my body. I certainly remember having them throughout my life, as isolated one-twitch deals. Then I would just watch them and say "hey, look at that" and forget about it. Those were isolated and I suppose I wasn't so anxious back then.

With the recent bout of twitching, I wasn't comforted by internet searches because of ALS. But I found this site and several other sites that at least mentioned benign cause, possibly made worse by anxiety. Unfortunately, the persistant twitching troubled me. I couldn't say for sure if I was just noticing them all of a sudden or they were truly a new thing. I decided one day that I would note every twitch and when it occurred. Basically they would occur all over, but slightly more frequently in my lower legs (calves), and slightly more frequently on my right side. But I'd get them elsewhere (first noted was my right shoulder; also under right rib once, thighs, inside of knee, bottucks, forearms, back, neck along my widepipe, neck under my jaw, to the right side of my nostril). I would get one every 5 minutes or so.

Also, the first noticed twitch (about 1 month ago) was my right shoulder and I seem to remember having my right arm feel tingly/achey/heavy that afternoon/night, kinda like it had fallen asleep, but that seemed to pass.

After coming to this site and doing much reading, I hoped the twitches were benign and got better mentally about it and I lived with them for two weeks. Then, I think a week went by when I didn't notice any twitches (or very few). Which was a good thing!

One night last week I noticed my right leg was achey (my thigh and calf) and I started noticing my twitches again. I started to get scared again. I also noticed tingling in both hands and both feet that would come and go. I also noticed what appeared to be twitching on the inside of my right foot, though I couldn't feel those twitches. What was also disconcerting was this periodic "buzzing/vibration" feeling in the ball of my right foot. It would repeat every 5 seconds or so then stop. It was not typical "pins and needles"/tingling and not twitching, more like holding an electric massager to the foot, but very faint.

I tried not to worry because me and my girlfriend were going to a festival for three days. We went for two days, Fri/Sat and I did quite a lot of walking. I didn't seem to notice my leg symptoms much. Though I got suddenly depressed thinking of this Firday night at the festival and we came home. When I'm "focusing" on my leg it sometime feels "weak", though there doesn't seem to be any real loss of strength (unless it's subtle). Same for the rest of body. No muscles seem to be weak, smaller or atrophied.

My thoat has also been "dry" feeling for several days. I was clearing my throat a lot and my voice became a bit raspy. I felt like I had a tickle or lump in the back of my throat, but I wasn't choking or anything. Thought my tonsils looked a bit red/with some white dots so I gargled salt water for a few nights, though my throat wasn't sore.

Sunday I had a complete meltdown mentally. My right leg still didn't feel "right" and these sensations pretty much settled in that leg (ocassional tingling in the foot, stiff, achey feeling, and twitching- though the twitching was still also in other parts of my body). It was the first time I felt 100% convinced I had ALS. I started imagining how the rest of life would play out, thought of me on my death bed, etc. It was horrible. Frankly, I believe it turned into another panic attack. I took a Valium in the afternoon and slept into the evening. When I woke up, I still felt extreme despair. Monday morning I called my GP for an appointment, which they scheduled for Wednesday (tomorrow morning). It was hard getting through the work day Monday and, coincedentally, my manager called me in about how I need to improve my performance. It actually turned out to be a good converstaion, but not a good sign. Monday night I took a Valium which helped to calm my fears...I seemed to accept other benign possibilities after taking the valium and slept decent. But, as soon as I open my eyes the fears started again and I noticed some twitches in my right leg.

I called in sick today, took 1/2 a Valium and napped through the morning. As of right now, the tingling and aches seem to have subsided for the most part. I haven't had any severe cramps. The occassional twtches, occasional buzzing in my foot, and a dry-feeling mouth/throat remain. My appetite has dropped since the leg thing started, as I'm scared and don't feel much like eating.

I just want the time to pass so I can see my doctor and get this over with. I suspect even if he reassures me, my mind won't be more at ease about this for another 2-5 months. I wish I could fast forward a year and see that I'm OK, you know? This is going to be very rough. I suspect I'll need to go on anti-anxiety meds just to function.

Thanks for "listening".
-Mike
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Postby mike3456 on September 21st, 2004, 4:08 pm

OH yeah,

This site and valium helps to calm my fears. Thanks for this site and all your postings.
-Mike
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Postby LeeNC on September 21st, 2004, 4:53 pm

Hey, Mike:

We're sympathetic to your anxiety. I think we've all been through it - and come out alive & tiwtchin, accepting that this is benign, whatever it is.

I've got several of the same symptoms you do. I started with visible, repetitive twitches in one thumb. Because I didn't know to differentiate between a repetitive twitch and a true tremor, I started worrying whether I had Parkinson's Disease. Within days, I started twitching all over, and it's been going on for 3 months now, along with an overall shaky-inside feeling. For a few weeks there, my chin trembled, my nose trembled, and my arm shook when I ate. The vibrating/buzzing foot thing is exactly like mine. I started having the buzzing feet 2 years ago, went to a neurologist then, and was told there was nothing to worry about. The sensation wasn't uncomfortable, and it didn't get worse. After a few months, I guess it went away, or at least I stopped noticing it. Now it's back again. So you're not alone.

The wonderful people on this board will help you deal with BFS.

--LeeNC
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Postby whatnext on September 21st, 2004, 5:17 pm

Mike,

I can totally sympathize and empathize with your situation! I'm a newcomer here too and my situation, symptoms and all, is rather like yours. However, I experienced about two months or so of perceived weakness and fatigue before the twitches started. They started about a week before my doctor finally put me on zoloft for anxiety (I've been in therapy for anxiety since 29 July). They set in really badly the first 48 hrs on zoloft, cramping too. I had to visit the ER I was so scared. That night (labor day night actually) I finally read the details about bfs on this site and that calmed me tremendously. Since then, I've seen a neurologist (actually the neuro's PA) who examined me upon referral from my doctor at my request. She declared me "neurologically healthy" and left the option for further testing up to me. Of course, I wanted the mri and emg just to ease my anxiety. I think I experienced my first "buzzing" last week (don't remember the exact day). BFS is a weird condition but just that -- benign.
I will ultimately and completely crush, defeat, anihilate, and eradicate my anxiety so it cannot and will not do the same to me.
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Postby Heater on September 21st, 2004, 9:32 pm

Mike,

What you describe is much like my experience as well. I started off with some mild but persistent twitches in a few locations, and when my anxiety levels went up, so did the intensity of my symptoms. As you have experienced, I will often find my calves sore and achy, and look down to see them twitching. I think the constant muscle activity for these long duration twitches causes muscle fatigue and associated pain.

I have had a lot of buzzing, especially early into this thing, where I would lay down in bed to have the vibrations in my legs so strong that the bed seemed to shake. The vibrating feelings have become almost negligible now, and I think it's due to me getting over the anxiety.

Perceived weakness has been experienced almost everywhere, but most noticeably in my hands. That has disappeared now too.

Sounds like you have classic BFS. Work to get over the anxiety and my bet is you'll find your symptoms will become less bothersome. I know, it's easier said than done, so many of us have been there.

Cheers,
Heath
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Postby mike3456 on September 21st, 2004, 11:03 pm

Thanks for all the replies and support.

I feel better now than I did Sunday and not under the influence of Valium at the moment. Took some Nyquil to help with the throat stuff. I think its post nasal drip from allegeries...I've had chronic sinus issues for awhile now...mostly one side or the other getting stuffed-up back and forth and on and off randomly through the day. I think post nasal drip may have started recently also.

Tomorrow morning is my doctor appt. Hopefully I can clearly communicate all my symptoms to him without losing him. He's a good doctor. He's a younger guy (30's) who really seems to know his stuff. I trust him. I'm not sure if I should be blunt about ALS fears or just give him the facts and let him talk. Figure that out tomorrow I guess.

Sometime I think it takes too long for me to get out all that I've been experiencing...but I don't want to leave anything out. Not that he isn;t a good listener, but he likes to talk a lot too...he's good about really explaining things in depth, but sometimes it makes the appt's go by too fast, with both of us talking a lot. A two hour appt. always seems like it would be better!

We'll see....

Thanks again.
-Mike
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Postby amy_twitch on September 22nd, 2004, 1:26 am

Hi Mike,

I could write you a LONG story sharing similarities--but I'll spare you. Your symptoms are oh-so familiar to us all!

I hope you read this before your doc appt. If he's cool, like you said, just write down all your questions on paper, and don't worry about being blunt. Iffy questions tend to get iffy answers. The blunt questions are the ones that get the most straight answers. Take your list into your appointment, and when your doc comes in to see you, just hand him the list and tell him (maybe in a joking way) that you know you'll be kicking yourself if you walk out of there without every question on there answered. If your doc is as cool as you say--I bet he'll appreciate your list. If he eases your worries--just toss the list in the trash on the way out...then he'll know he's doing his job well.

Keep us posted! And no worries about needing anti-anxiety meds. A month of xanax got me out of worry mode and brought some needed mental confidence back into my life. I've been medication free for a long time now!

Amy
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Postby mike3456 on September 22nd, 2004, 7:44 am

Hi Amy,

Thanks. I did see your post and I'm about to go to work. Waking up this morning, I was very nervous and even felt "weak", and of course it seemed worse in my right leg. I'm trying to convince myself its the nerves, just waking up, taking a hot shower, etc. Of course, I'm noticing twitching, mostly in both calves. I think I'll take your advice. I'll post an update here after my appt.

Thanks for your supportive words.
-Mike
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Postby mike3456 on September 22nd, 2004, 12:11 pm

Well, I had my doctors appt. and I'm still scared, though I guess I shouldn't be.

Without telling him my fears, I just took him through my symptoms. He asked about stamina and weakness, and I said I didn't think I had any weakness and didn't notice any lack of stamina. I asked him if the perception of weakness in a part of the body while you are at rest would count and he said no, and generally that's considered more pain than anything. He talked about the standing on your toes and walking on the heels as strength tests, but didn't ask me to try it (I guess that's a good sign). He did check some reflexes (arm, wrist, knees, feet) and didn't seem concerned and checked them pretty quickly (didn't stay on one trying over and over kinda thing). Before that he stated that he thinks the causes of my symptoms are "benign" in nature. Saying that all the things I describe occur for benign reasons and stated that even he twitches. Unfortunately he *had* to qualify that with he can't be *100%* sure, which I hope he just "has" to say, right? Without me inquiring, he didn't recommend seeing a neurologist, which I guess is a good sign. I finally fessed up to my intense fears to him, especially about ALS.

He knows I have health anxiety and said I seem to have generalized anxiety also. He gave me nose spray for my sinuses after looking at them. After discuassing the progression of my anxiety over the pas year, we both decided it was time for me to go on anti-anxiety meds, as the anxiety is starting to impact my work and other things. So, Zoloft was what he gave me. So I guess it's a good sign we focused a lot on the anxiety aspect.

He then said he could set up an appt. with a neurologist he works with right downstairs from him. He told me about the EMG without me asking. He was able to get me an appt. this afternoon with him. At first I thought that was great, then I started worrying that he was able to do that on such short notice, thinking like he was actually concerned about something. I asked him that and he said, no, the neurologist is just really good and was starting a "newer" practice, so he's often able to accomodate that. He said it's like that in the Austin, TX area. I guess that was somewhat comforting. I'm assuming he saw how anxious I was and got me in so I could stop suffering so much, especially seeing that I was so anxious. So my appt. with the neuro is 1:45. He did also say that a clean EMG pretty much puts the ALS thing to bed.

finally broke down and told my manager a lot of the gory details of my health anxiety, esp. seeing that I was out yesterday and will be out this afternoon. She was very understanding and went on to talk about future work-related stuff which was positive.

I'm still very nervous of course, as my leg still feels funny...stiff, achy, twitchy and even a perceived weakness at rest (which really scares me, even though the doc didn't seem concerned about it). I just try to hang on to the hope the board has given me and the facts- I can still walk without tripping, climb stairs, walk on my toes, lift my big toe, walk on my heels, etc, etc.

If can can just get through this appt. and hopefully react well to the Zoloft I'm hoping I can get through this...

Thanks again for listening.
-Mike
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Postby amy_twitch on September 22nd, 2004, 12:28 pm

Wow--good progress. Let us know after your neuro appt. That's so great that you can see him today. I really hope he can put your fears to rest.

Technically, zoloft is an anti-depressant (I think)...but is also used for anxiety. Have you used an SSRI like this before? I just want to give you fair warning that if you are prone to panic attacks, the zoloft might make them worse for the first couple weeks as your body adjusts to the drug.
If you have some uncomfortable side effects, ask your doctor to prescribe xanax or ativan to take along with with zoloft. It should hopefully lessen the side effects. Hopefully you'll be a lucky one and not get the side effects. I just want to make sure that you know it's normal to have uncomfortable side effects, and if you can ride them out, the zoloft should help you in the long run. I tried zoloft and lexapro--and couldn't tolerate either one, so I just stuck with a short-term regimen of xanax only, and it helped my anxiety without any uncomfortable side effects. My doctor also suggested Effexor (sp?) if I ever wanted to try a long-term anti depressant to help anxiety. I guess it has properties of both SSRIs and benzos (like xanax).

Just some stuff to keep in the back of your mind. Don't get frustrated with the drugs, and don't be afraid to try different ones until you find something that helps. Sometimes it takes a few different trials--but you'll get there!

Amy
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Postby whatnext on September 22nd, 2004, 3:09 pm

Mike,

Zoloft seems to be working well for me. I didn't sleep more than about 3 hrs during the first 48 hours on it though. I felt a little spacey for about a week, but nothing that overly concerned me (I'm spacey anyway). If you're like me, after about two weeks you'll be able to fend off the terrible anxiety. You'll still recognize it, but you'll be able to more rationally dismiss it and carry on. I go back to my GP for a "zoloft check" this Friday and I'm sure he'll want to keep me on it. I will have only been on it for three weeks and I'm pleased with my progress. I hope it works for you too!
I will ultimately and completely crush, defeat, anihilate, and eradicate my anxiety so it cannot and will not do the same to me.
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Postby LeeNC on September 22nd, 2004, 8:06 pm

Mike:

Like you said, your doc "has" to say he isn't 100% sure. Just take 99.9% and run with it!

I wholeheartedly second the wisdom from Amy and Whatnext. You may benefit from the SSRI, but also you may have to tolerate some pretty groady (remember that word?) side effects for the 1st week or so.

--LeeNC
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Postby mike3456 on September 23rd, 2004, 9:27 pm

Ha! Groady! Isn't that an 80's word? :P
Gag me with a spoon. Hey did you ever use the word "mintage!"???

Well my neuro appt. went fine. He asked me *a lot* of questions about my medical history, including mental/anxiety stuff and, of course, I described my symptoms. He then asked me if there was anything specific I was worried about. So I told him MS and ALS. He listened, wrote, and then did the exam.

He listened to my throat and chest, then did the tests for all the reflexes. Much more comprehensive than my GP (as expected). He went pretty fast, again, not stopping at any point and trying a few times. Then he did all the strength, balance, visual tests, and look in my mouth, etc. He then sat down and wrote all the results and said my exam was "perfectly normal". He said "I can tell you 100% you don't have ALS". "100%" coming out of a doctor's mouth is re-assuring. He said he didn't think I had MS either, as my symptoms were not a "typical presentation". He didn't want to do an EMG because he thought it wasn't necessary, but said he could order an MRI of my brain and cervical spine if I wanted (optional), to ease my mind. I asked him about the twitches and he said with ALS they *never* improve, even a little- so if you get twitches every 5 minutes one day then only notice a handful the next day, not ALS. He commented that he looked for, and didn't see, any twitches during my exam. I told him I had felt some, but he wasn't concerned at all.

I asked him if, hypothetically, someone were showing true clinical symptoms of ALS for a month (which I was *not*), would an EMG defeinately show something at that point, he said "yes". So I kindly explained how anxious I was and I told him that he *did* reassure me with his exam, but "something about having a test performed" would really ease my mind. So he agreed to do the EMG also.

He said I'm here to help you feel better- if giving you that test will help you feel better, than that's what matters. Of course I thanked him profusely.

So my MRI is tomorrow morning. I've never had one and they said the appt. will take 2 hours. They asked me if I'm clausterphobic. I kinda am, but said I can do it. I saw on the order sheet "r/o demylating disease and r/o disc disease". I think r/o means "rule out". And I saw that it was without contrast. EMG is Wed. I think they are going to do my right leg and arm (he asked my was areas concerned me the most).

So now I have to go through the anxiety of the tests and waiting on the results and worry about when they call (if they call too soon is that bad?what if they call later? or don't call until my follow-up?) geeez. I remember going through this for an HIV test way back in college...it's going to be tough.

whatnext, I saw that you were going for an MRI, but I didn't see anything about that afterwards (may have missed it). Could you post some of your experience with that (the procedure itself and how they followed-up, how long until they got back to you, etc.)?

I've actually more concerned about the MRI now. Even though I still get the twitches, I'm getting pins and needles in my hands and it seems my right foot. The hands thing started up again this morning and was on and off all day. I thought the hands thing was put to bed last Thurs night...oh well. I'm trying to convince myself the doctors are right that all these symptoms are "benign" and that maybe the tingling is chronic hyperventilation. By the way, I've seen some sources say that can cause twitching muscles as well. And it is very common, and common with panic disorder. You don't even know you're breathing wrong. Actually, a lot of my symptoms were a dead-on match. My 1st panic attack many years ago, actually started with *only* a steadily progressing tingling from my left hand up my arm and into the left side of my face, which led to "I'm having a heart attack", which led to a full blown panic attack. It truly was out of the blue, too, and never had one before that. That tingling was due to hyperventilation, so the ambulance guys told me.

I started the Zoloft last night. I slept 4-5 hours and woke up at 4:30. I felt anxious and couldn't get back to sleep. NOt sure if it was the Zoloft or just being so anxious the past week. So I just got up and watched TV in the dark with volume low.

Anyway, *thanks for listening* and *for the replies* to posts. Hope all of you are also hanging in there.
-Mike
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Postby amy_twitch on September 23rd, 2004, 11:01 pm

Hi again Mike,

Tingling in your limbs (especially extremities) is very commonly a sign of hyperventilation. Like what I've experienced, you most likely don't realize you're doing it. You don't have to be wheezing away to get hyperventilation. If you are anxious, you're probably breathing more from your chest instead of your stomach. Or you might be sighing more without realizing it. I ended up in the ER twice last year over 'panic attacks' which were diagnosed as hyperventilation syndrome. Trust me on that one! It can come and go without you ever realizing it. The best remedy for this is either a benzo (xanax, ativan, klonopin) as needed....or just breathing into a paper bag for a while. Helps every time!

Whatnext will be able to talk about MRIs like you asked. I had one last year to rule out MS too. If you're claustrophobic, they will likely offer you a valium before hand. I'm not claustrophobic at all--but I did feel a little 'trapped' when I first went in the tube. Basically you're in there for quite some time. The person doing the scan will talk to you through a speaker to keep you posted on what's going on. Be prepared for lots of strange and loud beeps and funky noises. I just kept my eyes closed and tried to relax--despite all the annoying beeps. I'd say I was in the tube for probably at least 45 minutes. It's a bearable procedure---considering you just have to lay there. Keeping your eyes shut will help with any claustrophobia as well. I was at the radiological center for a good hour and a half in total.

Don't stress about it!

Amy
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Postby mike3456 on September 23rd, 2004, 11:14 pm

Hi Amy,

Yeah I'm hoping it's hyperventilation...I have been really wound up the last week.

It's funny you say that, cuz I was thinking of keeping my eyes closed and taking a valium also.

Thanks for the words of encouragements and I hope all is well with you.
-Mike
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