opinions

BFS Online Support Group

Moderators: JohnV, Arron, garym

opinions

Postby jamesw20m3 on October 4th, 2014, 7:29 am

So it's my first post. I am a 38 year old physician, husband, and father of 2. First noticed fascist in hand 12/2014 while driving. Wow, what a roller coaster since then. Panic, irrational fear and sadness, depression, etc. I delayed my neuro eval until May for some work related reasons and to get my affairs in order as I truly thought this was it. Tried cymbalta for depression and severe anxiety with some improvement though fasics were worse.
My history. Mild life long anxiety, I'm the Classic type A doctor. Healthy until 2010 when I developed esophageal achalasia, another fun disorder, that I still struggle with. Fasics are widespread and constant. Arches of my feet, pleural, are more myokymia, I feel the fasics in my L calf every time I sit or rest. However, I get them in the face, arms, scalp, etc. no atrophy or weakness though I do feel the fatigue. I'm a workaholic and though a doc never exercise so can't tell how it's affected endurance. Can walk all over disney world fine though
Interesting, when it first began I went to my dad for help, also a doc. Said he had fasics, mostly in he feet, for decades. Mine are more impressive. He really never has been bothered by it. He was diagnosed with fibromyalgia 20 years ago but only mild case. We each work 60-70 hours weekly so not significant disability.
My local neuro, who runs our all clinic, looked me over as a favor. Quick exam strength, reflexes, movement, etc. said no worry about bad stuff. Who knows why. I has chest X-ray, Mri l spine, xt abd and pelvis, colonoscopy, upper endoscopy, etc to rule out paraneoplastic. Lab tiptoed out MG, Lus, etc. then saw all doc at Cleveland clinic. Most intense neuro work up I've seen. No issues. Recommended against emg as not necessary.
So, here I am. A scientist who wants answers and none exist. Still worry daily but much better. Thanks for such a great site.
jamesw20m3
Interested
Interested
 
Posts: 10
Joined: September 8th, 2014, 4:59 pm

Re: opinions

Postby MarioMangler on October 4th, 2014, 9:50 am

Welcome to the board, you sound like pretty much all of the rest of us. Glad we have been able to help, although we don't have many more answers than you do. Twitching sucks, but you can still walk all over Disney World. That's pretty much the story of it.
BFS FAQ:
1. No, that's not bulbar
2. No, the location doesn't matter
3. Yes, we have all had that symptom
4. No, you're not the exception
5. No, that's not ominous
6. No, you don't need an EMG
7. Yes, you will be fine
User avatar
MarioMangler
Saint
Saint
 
Posts: 1671
Joined: September 16th, 2008, 3:23 pm
Location: Upland, California

Re: opinions

Postby jamesw20m3 on October 4th, 2014, 11:24 am

Btw, for those just getting into this. I have these crazy hyperesthesias too. Buzzing in my left leg and foot. Classic stuff. I also really think there is a lot of bfs in fibro. I see it in patients often. I also see fasics now quite often in my patients. Again, thanks for the input on this site.
jamesw20m3
Interested
Interested
 
Posts: 10
Joined: September 8th, 2014, 4:59 pm

Re: opinions

Postby MarioMangler on October 4th, 2014, 1:34 pm

There are a lot of people here who think that BFS and fibro and chronic fatigue syndrome are all the same thing, only at different intensities. I happen to be one of them. If somebody who is unfamiliar with BFS asks me what I have, I just tell them it is like fibro only milder. I tell them it is fibro only with more sensations and fatigue and less pain.
BFS FAQ:
1. No, that's not bulbar
2. No, the location doesn't matter
3. Yes, we have all had that symptom
4. No, you're not the exception
5. No, that's not ominous
6. No, you don't need an EMG
7. Yes, you will be fine
User avatar
MarioMangler
Saint
Saint
 
Posts: 1671
Joined: September 16th, 2008, 3:23 pm
Location: Upland, California

Re: opinions

Postby Nytviolet on October 6th, 2014, 11:04 pm

Welcome to our world (although I'm sure you'd prefer to be elsewhere). I've had Fibro and CFS for about 18 years, and the fascics started at the same time. The past six months, mine have been in overdrive (I feel it may be hormonal, as I'm in perimenopause). Like you, the paresthesias are constant. Buzzing in feet, tingling, burning and (during exacerbations) profound fatigue. There are many of us on this board who have been twitching for more than a decade and are still without answers. Consumption / avoidance of certain foods, meds or vitamins seems to help some of us, but everyone is different. I'm now keeping a diary to try to determine specific triggers. Good luck and God bless.
2 Timothy 1:7 For God hath not given us the spirit of fear; but of power, and of love, and of a sound mind.
User avatar
Nytviolet
Selfless giver of time
Selfless giver of time
 
Posts: 122
Joined: June 11th, 2014, 11:48 pm

Re: opinions

Postby jamesw20m3 on October 8th, 2014, 11:14 am

For those of you who have been dealing with this for several years, do you still test yourself. I will find myself looking at my hands and feeling I have atrophy. They are fairly bony. How do you move past the resting and studying yourself? Is there a certain time goal when you felt this improved? I'm at 10 months. Thx
jamesw20m3
Interested
Interested
 
Posts: 10
Joined: September 8th, 2014, 4:59 pm

Re: opinions

Postby MarioMangler on October 8th, 2014, 12:01 pm

You have to stop testing yourself, it is the #1 rule when it comes to BFS recovery. All testing does is keep you in the cycle of fear and reassurance and worry. At a certain point with BFS you have to come to the realization that nothing you fear ever actually comes true. It just doesn't. So it doesn't make any sense to stay scared over this for months and months and months. All you are doing when you stay in that cycle is waste years of your life by being selfish and annoying all your loved ones and everyone around you. So you have to come to that realization sooner or later that self testing is pointless and you are making your anxiety worse. It is little more than just an OCD coping mechanism you have developed to reassure yourself that you are safe.

Once you come to the realization that self testing is the worst thing you can do to yourself, and you have never actually been in any danger (and never will be), it is easy to break out of it and just sort of move on with your life. So no, most old timers don't self test anymore. There's not really a time table when you should be moving past this step, it's really up to each individual person and how fast they want to kick themself in the butt and stop being ridiculous about things. Some people seem to want to stay in this stage forever. They stay there because it comforts them. Which is great, I guess, in the short term, but it doesn't really do anything in the long term for you or for the people around you.
BFS FAQ:
1. No, that's not bulbar
2. No, the location doesn't matter
3. Yes, we have all had that symptom
4. No, you're not the exception
5. No, that's not ominous
6. No, you don't need an EMG
7. Yes, you will be fine
User avatar
MarioMangler
Saint
Saint
 
Posts: 1671
Joined: September 16th, 2008, 3:23 pm
Location: Upland, California

Re: opinions

Postby jamesw20m3 on October 28th, 2014, 4:14 pm

When This started, like most here, I was a basket case. Took cymbalta had some psychotherapy. It helped but during that time I lost about 40 lbs. Of course that only confirmed I was dying in my mindset. Weight is back up but I swear my hands, feet, legs, arms are thinner. Anyone had something like this. I can really see the tendons on my hands now when fingers are outstretched. It's equal bilaterally and as noted I have no weakness. I feel is more fat loss/atrophy than muscle.
jamesw20m3
Interested
Interested
 
Posts: 10
Joined: September 8th, 2014, 4:59 pm

Re: opinions

Postby emmie.s on October 28th, 2014, 4:32 pm

Classic BFS. When it was at its worst, BFS was the best diet for me, because the anxiety made it so that I could scarcely eat; all of the adrenaline gave the feeling of being full from drinking twenty cups of coffee. Now I gained the weight back and then some.
But yes, you know already its fat loss, not muscle atrophy. What I've noticed (on other boards that I should have never ever visited) is that people who do have ALS noticed weakness before anything else. They will see that they can't grip as strong as before, but their hand looks healthy. Only then, after being unable to use the hand as before, does the muscle shrink visibly. So its weakness first, THEN atrophy. Because of course the atrophy comes from the muscles not being used, not vice versa.
I hope the psychotherapy helps you, and I am glad you found this forum here to see that you're not alone with your symptoms and that it is benign.
User avatar
emmie.s
Hero
Hero
 
Posts: 363
Joined: February 17th, 2009, 9:33 am

Re: opinions

Postby leaflea on October 28th, 2014, 4:51 pm

James, there seems to be something about bfs that causes skinny hands and feet, for some of us anyway. Do a search on this and you will see -- tendons, skin, bones, and veins is all they are. Could there be something about excess adrenaline or outher neurotransmitters that cause this? Potassium/Sodium channels? Who knows. It is all too complicated for my brain fogged mind.
Matthew 6:27 Who of you by worrying can add a single hour to his life?
User avatar
leaflea
Saint
Saint
 
Posts: 523
Joined: November 12th, 2013, 2:06 pm
Location: Minneapolis, MN

Re: opinions

Postby jamesw20m3 on October 29th, 2014, 7:28 am

Thanks to you all who help so much. How much strength should one have in the pinky finger in regards to abduction? I can keep my fingers outstretched against resistance normally but when I try to keep my finger tight together and pull the pinky away laterally it is easy and easier than my right side. However, I am right handed.
jamesw20m3
Interested
Interested
 
Posts: 10
Joined: September 8th, 2014, 4:59 pm

Re: opinions

Postby dolphin8808 on October 29th, 2014, 8:34 am

I am to the point where I catch every "slip" I have. For example, I "almost" drop something, I take mental note of it to see if it is a sign of weakness. Crazy right? If I stumble from not paying attention, I make note of it. I am a fitness instructor and try to see if I struggle more than normal while working out because hey that can me the worse, right/

Ugh....
dolphin8808
Senior Member
Senior Member
 
Posts: 59
Joined: October 2nd, 2014, 11:44 am

Re: opinions

Postby jamesw20m3 on December 4th, 2014, 4:11 pm

This is a repost as I haven't had much luck in symptom control. I have now developed a very annoying and at times nearly constant twitch on the bridge of my nose. Similar to an eyelid twitch but making me crazy. Has anyone else experienced this? Any specific suggestions?
jamesw20m3
Interested
Interested
 
Posts: 10
Joined: September 8th, 2014, 4:59 pm

Re: opinions

Postby MarioMangler on December 4th, 2014, 5:26 pm

How are you sleeping these days? I have found that facial twitching (especially around the eyes and nose and cheeks) is almost always correlated to how much sleep I am getting.
BFS FAQ:
1. No, that's not bulbar
2. No, the location doesn't matter
3. Yes, we have all had that symptom
4. No, you're not the exception
5. No, that's not ominous
6. No, you don't need an EMG
7. Yes, you will be fine
User avatar
MarioMangler
Saint
Saint
 
Posts: 1671
Joined: September 16th, 2008, 3:23 pm
Location: Upland, California

Re: opinions

Postby jamesw20m3 on December 5th, 2014, 12:34 pm

I sleep well but never enough. Young children. Thinking of trying lunesta to help.
jamesw20m3
Interested
Interested
 
Posts: 10
Joined: September 8th, 2014, 4:59 pm

Re: opinions

Sponsor

Sponsor
 


Return to The Support Group

Who is online

Users browsing this forum: Google [Bot] and 5 guests