Update - Almost 2 years in

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Update - Almost 2 years in

Postby JB15 on April 8th, 2011, 3:42 pm

Hey guys
I was around here a while ago - can't believe my note is still stickied at the top of the page! So awesome!
Anyway for people who are worried, here's an update that'll hopefully make you feel better.
Yes, I am still twitching. Yes, I still have 3+ brisk reflexes, yes I still have 3-4 beats of clonus in my ankles. And yes, I am stronger than I've ever been in my life.

I came on here because all of this was really thrown in my face today. I'm in medical school and today we were doing neurological motor exams. Well I ended up being the test subject for everyone to witness my lovely bfs and they thought it was pretty neat! I induced a bunch of twitches in my hands by flicking them super hard. And allowed all the students to feel my clonus during dorsiflexion of my ankle. My brisk reflexes were a hit too.
Anyway - if this is you, the twitches, brisk reflexes, "perceived" weaness, tinglies, clonus, whatever. Take some relief from my story. Please. This brought back a lot of painful memories from 2009 --- when I cried and cried thinking I had MND. Today, almost 2 years (probably about 22 months) later, I'm in the best shape I've been in ever. You CAN have these symptoms and be totally okay. I am living proof. And there are thousands like me.
Stress makes it worse, acceptance and relaxation make it about a thousand times better. Let your CNS chill out.
-Josh
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Re: Update - Almost 2 years in

Postby johnnythejet on April 8th, 2011, 3:45 pm

Like.
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Re: Update - Almost 2 years in

Postby mommylondon on April 8th, 2011, 4:41 pm

I love that you came back to post this. I've felt like odd man out on here for so long just because of my clonus. I know you may not come back to check this but I was told the 3+ were just brisk reflexes with out clonus, and if there was clonus they are 4+ meaning brisk with clonus. Is that not rite?? Just curious because I was told mine were a 4+ because they were brisk and I had clonus. I'm not so sure that they are as brisk as they were because my clonus isnt as easily observed these days, but is still there when I become ridden with adrenaline for what ever reason. I could have anything from a few beats to several beats, to continuous beats, depending on my anxiety level, I was told my clonus was un sustained because of these fluctuations. But like I said these days its not there most times its checked.

Any way, thanks for coming back and posting the reassurance, we have had two others post over the past few months that showed clonus as well, so this should help them as well. Its great news to hear that you are doing so well. :D

Take care

Robynn :D
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http://www.youtube.com/watch?v=Rd6BlNKCkRs
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Re: Update - Almost 2 years in

Postby JB15 on April 8th, 2011, 6:49 pm

H Robynn
Grading reflexes is a bit fuzzy -- yes, 4+ can be brisk with clonus but it depends what youre testing. For example, my patellar reflex is 3+ but the clonus is unsustained and only a few beats in my ankles. Neither brisk reflexes nor clonus are particularly worrisome. I wasn't the only one who had clonus in my group by the way. Other students did too. A few beats of clonus is physiological and just depends on the state of hyperactivity. Obviously more anxious people will have more clonus.
Don't feel like the odd one out, I have it too and as I say I am TOTALLY fine.
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Re: Update - Almost 2 years in

Postby ryans2u on April 8th, 2011, 11:07 pm

Congrats, Josh -

Sounds like we have similar stories. At the height of my BFS (about 9 years ago) my reflexes were graded to be 3+ and even 4+ in other exams. Had a failed EMG due to "profuse fasculations". It's kind of funny in retrospect as I asked the doctor does the failed exam mean I have ***. He said "no, you don't have ***. I fully expected to find twitches on your exam as I can see the twitches when you sit here! What did you expect?

Anyway...congrats to you!
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Re: Update - Almost 2 years in

Postby JB15 on April 10th, 2011, 9:02 am

Hey Martin -- you're right. There are all sorts of weird things that go on with bfs and the anxiety that we all feel only makes things worse. The tinglies, vibrations etc.
Anyway -- I happen to be working right now with the chief of neurosurgery at a prominent hospital here and I joked in a meeting that I was being a test subject for our clinic because I had fasiculations, brisk reflexes and some non-sustained ankle clonus. He just laughed and said "haha sounds like your CNS is just in overdrive" -- just goes to show these symptoms don't even phase the experts.
Anyway Robynn I also just conferred with a colleague and he agreed that non-sustained ankle clonus with brisk patellar reflexes is not 4+. 4+ would be brisk with clonus in the same reflex. You don't assign a global reflex grade, you grade each one. So the patella would be 3+. The ankle might be 3+, but my ankle reflex isn't brisk (nor are my biceps, triceps, brachioradialis etc). 4+ would be if my patella was brisk and then my quad kept contracting or if my ankle plantarflexion was very brisk and had sustained clonus of 5 beats or more.
So don't fret. Ok heading to the gym!
:)
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Re: Update - Almost 2 years in

Postby mommylondon on April 10th, 2011, 7:52 pm

JB15, thanks for checking on that for me, I do appreciate it. Unfortunatly I am more confused. I believe I understand what you are saying, but my neuro when I asked what my reflexes were, he said a 4 with non sustained clonus. I asked him why he wasnt concerened and all he said is because I was a bit brisk all over. :shock:

I hope you come back and see this because I would like to know what you meant by the ankle reflex being brisk. Is that when they tap the tendon behind your foot?? I remember that was how one doctor checked for my clonus, I was very anxious back then and had several beats. If you tap behind my foot when I'm calm, you maybe get 3 beats max. I do know they said I had no reflex spread whatever that means.

Would you help me figure this out JB, I just want to be able to stop worrying about it, but its hard when I hear different things about reflexes, I just dont understand. All I know is that I never asked for one test because back then I knew nothing about neuro disease, but my reflexes took me from an ER and landed me in a neuro's office and in an MRI machine, and then lots of blood work, and then an EMG done in my legs, 8 sticks in my legs, all clean.

If you could explain the ankle reflex and why maybe my neuro would have said 4, you would be helping me out so much as I do not have a neruo any longer do to insurance issues. Another thing, they say sustained is 5 beats plus, when I'm anxious mine is like a tremor, it beats very fast (so several beats) but when calm, not so much if any on some occasions. Is that why he said mine is non sustained?? These are areas that confuse me, mine is sustained when anxious isnt it??

Thank you so much for coming back to talk with us.

Take care

Robynn :D
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http://www.youtube.com/watch?v=Rd6BlNKCkRs
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Re: Update - Almost 2 years in

Postby JB15 on April 11th, 2011, 7:11 am

Hey Robynn
Yep, the ankle reflex is when you tap the achilles and look for plantar flexion of the foot. The clonus will be seen when the neuro grabs your foot from the sole and pushes upwards. Clonus is just a few beats of your foot pushing back against his hand, and a few beats is NORMAL!!!! LOL. :D
Generally having brisk reflexes all over is more of a sign of anxiety than anything else. What they are looking for is symmetry. If for example your left leg was a 3+ and your right leg was a 1+, this would be unusual and might suggest something is going on one way or the other. But bilateral brisk reflexes aren't concerning.
Seriously Robynn it sounds like you have been run through a gauntlet of testing and have more reassurance that you DONT have anything wrong with you than 99% of people out walking the street! I wish I had an MRI an EMG etc lol (well actually I don't, because neither are necessary and that would be a waste of tax-payer money and cause me undue stress). But you have so much information that suggests you're fine, at this point I think perhaps cognitive behavioral therapy with a professional to help deal with your health anxiety is the next best thing. Your anxiety is clearly the root cause of all of this, as it is with all of us, and once you are able to deal with that your symptoms will improve, I have no doubt.
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Re: Update - Almost 2 years in

Postby ryans2u on April 11th, 2011, 9:49 am

At the height of my BFS anxiety around 9 years ago I had 3+ to 4+ reflexes. Doc said same thing, that he was interested in symmetry. BTW...I had two EMG's that returned as abnormal. One for "profuse fasciculations" and the other for a fibrillation. After a couple of years of Celexa and an additional 7 or so years with no major issues my reflexes are back to 2+. Still twitch and cramp like crazy, but oh well. With BFS, even when you think you're not anxious you really are. :)
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Re: Update - Almost 2 years in

Postby mommylondon on April 11th, 2011, 10:01 am

Thanks JB. I appreciate you taking the time, I really do. I tend to be someone who has more anxiety when I dont understand something. I hate not knowing why when it comes to my body. Over the past 10 yrs I've had a leasion found on my kidney on an MRI, then it just went away. Had a brush with Histoplamosis, or lung cancer when they found a good size white spot on my lung after a respritory infection, (its still there but was told it was nothing ),then a run in with cervical cancer about 5 yrs ago when a pap smear came back with severe displasia (it just disapeared after next preganancy) but with all that, I never once freaked out or even felt doomed for some reason. Fast forward to this stuff, and an ER doc said "Hey, I see fasciculations on you and your reflexes are quite brisk with ankle clonus"" :shock: :shock: "You need to see a neuro, you could be looking at a Brain Tumor, MS, or ALS :shock: " Thats when I freaked and lost it. I knew nothing about any of that stuff, but had Dr. Google to help explain. Dr. Google was quite abbusive. That and even after the testing I had, my neuro would never say I was fine, no dxs, he didnt believe in BFS no matter how much I twitched or tremored. Needless to say, I havnt dealt very well with the big question mark he placed over my head :?:

Oh well, such is my luck, I'm coping better these days

Thanks again JB15, you are a patient soul.

Hugs

Robynn :D
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Re: Update - Almost 2 years in

Postby mommylondon on April 11th, 2011, 10:09 am

ryans2u wrote:At the height of my BFS anxiety around 9 years ago I had 3+ to 4+ reflexes. Doc said same thing, that he was interested in symmetry. BTW...I had two EMG's that returned as abnormal. One for "profuse fasciculations" and the other for a fibrillation. After a couple of years of Celexa and an additional 7 or so years with no major issues my reflexes are back to 2+. Still twitch and cramp like crazy, but oh well. With BFS, even when you think you're not anxious you really are. :)



Thanks Ryan, it is reassurring to hear from someone else with a similar experience, and I love hearing that your reflexes have returned to normal. Hope you are hanging in there alright, it sounds like you are.

Thanks again for taking the time to share with me your experience

Take care Ryan


Robynn :D
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Re: Update - Almost 2 years in

Postby JB15 on April 11th, 2011, 11:33 am

Hey Robynn
Well that sounds like a lot of stuff to go through -- but you have to remember, we are human. Our bodies are highly complex, and things do occasionally go wrong. This doesn't mean that every single sensation or incidental finding is a death sentence. It sounds like you've had a bunch of innocuous findings and I can imagine it's a situation where you're constantly thinking "but what if this time it isn't -- what if this is the thing that kills or severely disables me and my life is ruined". It certainly seems as though the clonus and fasiculations are NOT going to be that thing. Yes, something, one day, will kill us (sorry, but it's true). We can either freak out over every little thing that comes our way, or we can continue to live our lives the best we can, and only panic or get really upset when a physician says, look, this is it, etc...ok so that was depressing, lol.
Anyway, the jerk in the ER sounds like a terrible doctor. Any idiot that tells you that brisk reflexes and fasciculations are likely to be a BT, MS, or ALS should have his license suspended. Let me tell you about an exercise my shrink did with me the other day which I found to be really helpful. He grabbed a DSM-IV, which is a handbook of all the psychiatric diseases out there....he flipped to random pages and asked things like "So tell me, do you ever get irritable?" - I said sure...and he says "how about sweaty?" of course I get sweaty. He says "uh oh, sounds like you're in amphetamine withdrawal"....then he goes "Ok also do you ever cry?" I said sure..."and do you ever feel lonely?" - sure I do! "Ok, you've also got clinical depression"....the point is he was able to flip through every disease and we all have one or two or three things that might be involved in a slew of other things in a disease. The point is the WHOLE clinical picture has to fit. I've been having a bit of a relapse this week myself, paranoid that I have a weakness in my left leg. But then I go to the gym and I leg press 300 lbs, I extend 140, and I run for 25 minutes" (I am 150 lbs by the way lol). So I say, ok, idiot, don't you think you might have some difficulty doing these things if you had a weakness? You wouldn't even be able to get off the toilet. lol.

Don't let one ignorant idiot dictate how you interpret your body's symptoms. We all have doubt, and part of life is just managing that doubt. You eat at restaurants knowing the food could be contaminated with listeria or salmonella, you drive in a car knowing you could crash and die, or you could suffer a spinal cord injury, or worse, kill someone else and have to live the rest of your life with that guilt. You have to be ok living with some doubt, otherwise the end of your life will come and you will realize you never even lived because you were so worried the entire time about what would finally do you in.

Hang in there, post any time!
--Josh
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Re: Update - Almost 2 years in

Postby mommylondon on April 11th, 2011, 12:01 pm

Thanks Josh, and your words are so true. It is changing my thinking to what you just said that finally started to bring me out of my depression. Lik I said, I am functioning better these days, although I have yet to be able to return to working out. I still deel with significant fatigue and I so wish it would let up so I can enjoy life a little more. Its warming up here so I will be taking full advantage of the pool this summer and hope I can build some stamina back up with swimming and also taking some walks.

You are awesome Josh, thank you, and I'm sorry for your bit of a relapse,.
I'm sure with your positive attitude that you will snap rite back, but we are here for any support you may need.


Take care Josh

Robynn :D
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Re: Update - Almost 2 years in

Postby ryans2u on April 12th, 2011, 12:07 am

mommylondon wrote:Thanks Josh, and your words are so true. It is changing my thinking to what you just said that finally started to bring me out of my depression. Lik I said, I am functioning better these days, although I have yet to be able to return to working out. I still deel with significant fatigue and I so wish it would let up so I can enjoy life a little more. Its warming up here so I will be taking full advantage of the pool this summer and hope I can build some stamina back up with swimming and also taking some walks.

You are awesome Josh, thank you, and I'm sorry for your bit of a relapse,.
I'm sure with your positive attitude that you will snap rite back, but we are here for any support you may need.


Take care Josh

Robynn :D


Robynn -- You mentioned fatigue in your post. I neglected to mention it, but fatigue was one of the biggest side-effects that I experienced during the BFS days. It was so bad that I had difficulty holding my arms out in front of me for more than a minute or so. My shoulders would get incredibly tired. To this day I don't feel I have completely recovered my previous energy level, but at least I can run and work-out now without any problems.
Thanks for the good wishes. Everything is good now. Back when all of this started I was a complete basket case. Nine years later I am out and about doing more things than ever. :)

All the best to you..
R-
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Re: Update - Almost 2 years in

Postby JB15 on April 12th, 2011, 6:33 am

Hey Ryan
Thats interesting that you mention the fatigue. Do you think this was real fatigue or were you in a way psyching yourself out by worrying about the fatigue and concentrating on it? Sometimes I feel like I'm getting fatigued but then when I distract myself some other way and stop focusing on whatever muscle it is, I notice I'm not actually fatigued at all...It sounds weird...but I have a powerful mind, haha.
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Re: Update - Almost 2 years in

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