Hello all- an update.

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

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Hello all- an update.

Postby mike3456 on October 18th, 2004, 9:13 pm

Hello all,

I haven't been posting much lately, but felt like I needed to post an update. See my previous posts for my detailed history.

I go to the neuro tomorrow for a review appointment. I had a neuro exam 4 weeks ago and EMG 3 weeks ago that were "normal", and a CPK of 44 three weeks ago (which is normal and on low side). I had a brain and cervical MRI 3 weeks ago that was normal except for two herniated discs (c5/c6 and c6/c7). I've noticed twitching since mid-August. I've had strange intermittent symptoms in my right leg since about 5 weeks ago. I get various feelings of very dull aching or possibly "percieved" weakness in my right leg (butt, thigh, knee, and most often in my shin, calf, ankle, and sometimes to the top of my foot). I notice it at rest or walking. It varies day to day, even hour to hour. About 3 weeks ago, just before my EMG, I noticed my right shoulder/bicep/tricep area seemed to be fatiguing easily. I first noticed it when I carried a few gallons for water from the car to the house.

Of course, that combined with the leg issues and twitching sent me into a tailspin of fear and anxiety. I've always had axienty to some degree and medical worries are usually at the top of the list. I had been seeing a therapist since the beginning of summer. Interestingly enough, the therapist has been talking to me about ADHD (adult ADD in my case), and I'm reading the book "Driven to Distraction". He hasn't quite oficially diagnosed me yet, but I think he will. He said the ADHD can coexist and amplify feelings of anxiety and depression. I've been on 50mg/day Zoloft for 3-4 weeks, which has helped somewhat. I still get moments of panic, anxiety, and despair, but they seem to be shorter-lived and I seem to be able to concentrate better at work.

Unfortunately, the last week hasn't been great and I'm worried again. I started noticing my *left* arm feeling somewhat fatigued now and I seem to be feeling those leg sensations a little bit in my *left* leg now. My twitching has been a bit increased in the past few days, but I'm hoping that's due to increased worry/anxiety. I notice I get shaky arms when I exert them, even if just for a short time.

In a follow-up appt. for my Zoloft dosage 2 weeks ago, my GP asked if the neuro noticed brisk reflexes, and said people with high anxiety can show that. As he was telling me this, he starting checking my reflexes and when he got to my knee-jerk (patellar) reflex, he said "Yeah, you see, that's what I mean.". I freaked out, but I asked him if he was concerned. He said no. I think he was trying to comfort me that if the neuro had noticed brisk reflexes, anxiety could be the cause. Well, after leaving his office, I started panicing at work and sent him a note asking for more detail. Here was his response:

"It's one thing to worry about someone's reflexes when they haven't been neuroimaged, it's another if they have been. If you came in with very brisk reflexes and I didn't know why, then there could be a central nervous system lesion causing this. Yes, yours are symmetric and equal in the upper and lower extremities. Knee reflexes are often brisk. As I was saying, a little more adrenaline circulating can do this so don't worry. "

I think he's implying here that my MRI rules out a "central nervous system lesion". At least they were symmetric and equal and knee reflexes are "often brisk". But of course, this still weighs on my mind.

I just wish it was a year or two from now, so I can finally put my mind at ease that this is all benign. I'd gladly jump ahead two years of my life for the reassurance I'm OK. Though this board is comforting, for every statement that conforts me, there seems to be an unanswered question or inconsistency that worries me. It bothers me that neither my neuro or GP mentioned BFS and that information on the subject is limited. I didn't ask them, but wanted to see if they mention it themselves.

There's a lot questions I want to ask the neuro tomorrow. Part of me is afraid to ask too main questions- afraid they won't be the answers I want, or afriad they will just lead to more unanswered questions. But the other part me knows that if i don't ask, I will wonder and that will eat away at me.

Thanks for listening.
-Mike
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Postby Johnny on October 18th, 2004, 10:32 pm

Mike,

I say - ask the questions. Ask them all and if you aren't satisfied with the answer, ask the doctor to clairfy. They are paid for your time. Also, it was helpful for me to bring my wife because she was able to repeat his answers back to me later on after my head stopped spinning.

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Postby puggriffey on October 19th, 2004, 10:07 am

Mike-

Some quick thoughts:

* It is virtually certain that if you have BFS, you will have varying, migrating "weakness" associated with it. Almost all of us do. It tends to settle in one spot for a period of weeks/months (such as a leg, or an arm) and then as stragely as it came, it disappears. My personal view is that it is anxiety at work (our subconscious minds constantly focusing on it, even when it doesn't seem to us like we are)

* Brisk reflexes play hand in hand with this. I think your physician explained it perfectly - in the absence of neurological testing, your brisk reflexes "might" start up a cycle of examination. This cycle would be exactly what you have already done, and the negative results you achieved would put you in the same place - benign. It is VERY easy to overreact to things you will encounter as you get "normal" tests performed - brisk reflexes, a mysterious "static" sound during an EMG or even fascics that show up on the report, etc. There is a school of thought out there that firmly believes the amount of testing we do in healthcare these days is excessive - everyone has little "abnormalities" that show up that are indicative of nothing, but can lead you down an incorrect diagnosis path or cause great stress to a patient. In your case, your brisk reflexes mean that you have underlying anxiety and nothing more in all liklihood.

* Regardless of what you might read on a website somewhere or whatever, most every highly trained specialist will tell you that the serious neurological disorders are first marked by clinical weakness and/or substantial systemic failure - NOT perceived sensations and/or subtle events. This is not universally true, and us worriers always feel we are that one exception, but this area of medical science is well recognized as one of the more uniform and diagnostically sound areas (unlike cancer or various viral illnesses that can lie dormant and appear in numbers of different ways). Bottom line - if you wake up one morning and can't get yourself out of bed and/or pick up a toothbrush, be concerned (and even then, MOST of the causes for this type of systemic failure are still very treatable!). Until then, regardless of how extensive a road of diagnostics you need to convince yourself, you will be in the same place we all are - normal, but anxious BFS'ers.

Hope this helps - smile, and enjoy your day!

JG
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Postby whatnext on October 19th, 2004, 5:30 pm

Ask the questions! My experience is that doctors, even specialists, respect the patients who are informed enough to KNOW to ask the questions. My GP is particularly good about this with me. My neuro PA was just as good as was my neuro. If you don't ask now, you'll probably regret it later in a game of "what if...". Don't risk it. ASK!
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 October 19th, 2004, 8:48 pm

Mike:

I was wondering how you were doing.

JG posted a very sensible reply. (Mr. G, what's with the "pug"?)

You sound so pitiful, wishing you could fast-forward a year or two. But you sound just like I felt a few months ago. The good news is, for most of us, it really doesn't take a whole year to let go of the immediate fear - at least not if we have this board and its collective wisdom. As someone else recently posted, after a few months you get so sick of the symptoms (bored, he called it) that you just learn how to shrug them off. So what's a little weakness/weirdness/wobbliness, we say, as we march on. May you soon get to that place where you really accept that this is not going to get worse and (knock on wood) should eventually go away!

Doctors really do give you more info if they get the sense that you know what you're talking about. Another thought, you were concerned that neither the neuro nor your GP mentioned BFS as a probable cause of your twitching? I think you should focus on their belief that this is benign, instead of wondering why they don't call it fasciculations. I think many doctors are reluctant to apply a label if they don't see a classic case of fasciculations right on the table. You don't need the BFS label to hear "benign." Take care, and keep in touch.

--LeeNC
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Postby Barb916 on October 19th, 2004, 8:56 pm

Mike

Maybe doing what I do will help you. Sit down tonight for 10 minutes or so and WRITE DOWN your questions. I do this all the time especially when I'm nervous about a particular appointment. When I'm at the doctors office, I pull out my paper and ask away!! I have found that the docs actually appreciate you being prepared. It's better to write it down, anything you can think of, so that you don't leave the office and say, Darn it (or something worse :) ) " I forgot to ask him/her about..whatever. Then that 1 thing will be the thing you can't forget about until you next appointment which may not be for a few months.

I hope this helps !

Let us know how you make out.

Barb
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Postby Barb916 on October 19th, 2004, 9:00 pm

Oops, I just realized that my advise is a little late. :oops: I see that you posted this on Monday meaning your appointment was today. Sorry. Did you remember to ask all your questions?

Let us know what the doc said.

Anyway, I hope my advise helps others that have appointments coming up!

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A good news update

Postby mike3456 on October 19th, 2004, 11:38 pm

Thanks all, I really appreciate those replies, and I took all of your advice (and glad I did).

I had a great appt. at the neuro this morning. I did ask *a lot* of questions and all the answers were *very* reassuring.

My neuro said that the anxiety, combined with my neck problems, computer work, poor posture, muscle tension, certainly can cause my problems.

The neuro comfirmed that my reflexes are slightly brisk, but totally normal, symmetric left to right, and top to bottom (as my GP said). He said people who worked out heavily sometimes have slightly decreased reflexes, but I don't work out, so that could be part of the explanation. He also agreed with my GP statement about anxiety possibly causing increased reflexes. He actually said I had a slight decreased reflex in my left arm which he was totally unconcerned about (based on all the other findings), and attributed it to my C6/C7 herniation.

He said that now that he has reviewed my MRI of the brain and cervical spine, EMG of the right arm and leg, nerve conduction of the right arm, leg and left arm, complete neuro exam, and recheck of my upper extremity strength and reflexes (today), he said,

"You do not have ALS, you do not have ALS". Yes, he said it twice. He knew that and MS were my concerns. Of course, no MS either.

He said it was valid for me to seek an exam with him based on my symptoms, and that he considers all possibilities when he first meets and examines a patient. But, now we have all the test results.

He said the EMG showed no abnormalities (specifically he mentioned no fibrillations or fasciculations). He said my reflexes were very good, I have good strength and muscle tone, and no deterioration or worsening of any signs and symptoms since this started two months ago (which would have been the case if it were ALS). Brain was completely normal, and cervical was normal except for a disc bulge/spur to right side of C5/C6, and a disc herniation/spur impinging on the nerve root to the left at C6/C7. But no demylation anywhere (i.e. MS). He said that nerve conduction and EMG can be normal even with nerve impingement/irritation, if the nerve hasn't been permantly damaged, and I could still have intermittant aches, pains, weakness in my arms due to the disc issues, but no damage shows on the nerve conduction. He said he prefers to be very conservative and non-invasive if my symptoms stay mild, and gave me Celebrex (anti-infammatory) to use as-needed. He said many people with herniations have no symptoms, even if the MRI shows impingement. He said if there is no clinical problems, symptoms, and normal EMG, there is no reason to be invasive (i.e. shots or surgery).

I asked about the right leg and he said, based on the all test results, he's not sure about the leg and said it's probably not Restless Leg Syndrome, as I don't really have an urge to move my leg. But, he was totally unconcerned, based on all the tests and my exam. I asked if it could be sciatica, but he said probably not, as that usually presents with shooting pain from the lower back down the back of the leg. I asked if I could have other bulging or herniated discs in my lumbar spine causing the symptoms. He said it's possible, but not worth an MRI for the same reasons as stated above- if there are no majors problems caused by it (EMG findings or bad pain), the treatment would be "live with it" anyway. :) Well, that and anti-inflammatories and doing exercise. He recommended swimming, walking, etc., but nothing too high-impact due to my neck and the possibility of other back issues. He also gave me neck exercises to do.

My CPK was 44 and, therefore, very good (lower is better, and the low end of the range was 29).

I noticed that he had requested the results of my recent Heart CT (which was normal), which made realize he was exploring all avenues.

So I asked the the obvious question: why do I have twitching? He said it's a common and it's called,

"Benign Fasiculations".

He said if you asked a lot of people around my age, many would tell you they get them. He said my recent flare up could have been brought on by increased stress, lack of sleep, and caffeine. He said increased adrenaline from anxiety puts the muscles and nerves "on alert", and also causes some fatigue, both of which could increase fasciculations.

He gave me the choice of scheduling a follow-up in 3 months or just to call and make an appt. if I have any other problems. I elected to call if needed. He said that's reasonable.

So, it was a very thorough, reassuring appt. Also, I got a good *feeling* about things just from his tone of voice, posture, attitude, etc. In other words, I felt he was truly competent and confident about his findings. The best I could hope for. I hope this is reassuring to others.

It's funny, I don't really notice any of my symptoms tonight.

I think I have enough evidence now to put this to bed and get on with my life.

Thanks again all...I'll still be around . :D
-Mike
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Postby whatnext on October 20th, 2004, 7:32 pm

Congratulations! Sounds like you have one of the GREAT GP's too. The ***REAL*** clincher that keeps me from sinking back into the old anxiety pit is the length of time I've had non-progressive symptoms. I've had perceived weakness since June. It was constant, but non progressive. It virtually went away once I started Zoloft. I started twitching the week of September 30. It started as intense, but then tailed off once I started Zoloft. It's been almost two months since twitching began and three months since the perceived weakness set in and by now if I had some bad neuro disorder things WOULD have progressed! We both still walk, talk, run, jump, play, eat with no problems. (Rain has kept me from walking for the past few days but it won't rain forever! My new goal is to do 3 miles/day by year's end.)

You're right about a neuro's reassuring attitude. My neuro PA's "bedside manner" went a LONG way toward easing my fears. In fact, a friend of mine who's a counselor/therapist knows my neuro and her PA. Without me knowing at the time, he called the PA and personally told her how pleased I was with her care and positive attitude and that it went a long way toward easing my anxiety. Of course, I'd already thanked her profusely but it was so nice of him to do this as a professional too.

The neuro PA explained that my reaction was analogous to that of a woman who discovers a breast lump. The situation is most probably benign but we, being human, tend to always expect the worst. In all cases we do the right thing by seeking care when we experience any unusual symptoms.

WE WILL OVERCOME THIS!
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 Bree on October 20th, 2004, 10:26 pm

Mike,

I'm so happy to hear your good news! It sounds like you couldn't have had a better report.

Enjoy!
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Postby Barb916 on October 21st, 2004, 12:25 am

Mike

Good for you !! I'm so glad you can but all this worrying behind you. What a HUGE load off you mind! Congrats.

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Postby mike3456 on October 21st, 2004, 10:47 pm

Yep, I feel pretty good now. Even went on a work outing today. We canoed for 3 hours and my arms felt fine. Still haven't had to take any of that Celebrex. I had a ot spot flare up last night on my left bicep, but it didn;t really bother me nuch. Just minor aches here and there, but nothing major.

Thanks again for your replies. :)
-Mike
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Postby mike3456 on November 9th, 2004, 2:38 am

Hi all, just another update.

All my symptoms of weakness, aches, pains, tingling, vibrating, and cramping have basically gone away. My twitching has greatly diminished, though I still notice them occasionally. I'm still on 50 mg of Zoloft daily and weekly therapy. Stress levels are lower, for sure, and no panic attacks. I've been able to focus better at work, and I'm enjoying hobbies more (tropical freshwater fish-keeping mostly).

Hope all is well with all of you.
-Mike
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Postby LeeNC on November 9th, 2004, 11:11 pm

mike3456 wrote:Hi all, just another update.

All my symptoms of weakness, aches, pains, tingling, vibrating, and cramping have basically gone away. My twitching has greatly diminished, though I still notice them occasionally....


Mike, how absolutely wonderful to get such a GOOD update from you. Hope for the rest of us!

--LeeNC
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2 years later and all is well...

Postby mike3456 on November 30th, 2006, 12:14 am

Hi all,

If you look at the dates you'll see over 2 YEARS have passed since these posts. I figured I'd post a follow-up to give others hope.

My fears of ALS are gone. I have NO thoughts if it anymore. I still twitch ocassionally and I'm sure there are many that go completely unnoticed by me. I also still get mild tingling in my feet and hands that waxes and wanes, but I'm convinced that's benign also.

I've been off antidepressants for over a year and my anxiety level (and blood pressure) have been much lower.

I think I was having a hard time adapting to a new job and a new state back then, amongst other stressors and emotional issues. I think most of my symptoms were physical manifestations of mental/emotional problems - either benign physical conditions (BFS) made worse by the anxiety and worry or normal bodily sensations that I greatly magnified due to worry/anxiety.

If you look at my posts, you'll see how scared and hopeless I was then. Hang in there if you are going through dark times - better times are ahead.
-Mike
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2 years later and all is well...

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