Even rational Docs get worried

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

Please use this forum to post give and recieve encoragement and reassurance from sharing the trials and triumphs you have faced.

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Postby ryanbabs on March 6th, 2006, 2:33 pm

Wolverine wrote:ryanbabs,
That is funny because I was going to reply the same thing. When I read yours I just laughed. :lol: Us twitchers think alike.


Yes, we all twitch and think alike...
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Postby CJH on March 13th, 2007, 4:12 pm

Well I have been off the board for quite a long time and I feel a little guilty as I received so much helpful and kind support early last year.

Felt I should write to let everyone know how things are.

Basically unchanged!! Still twitching away. Cramps can be a real nuisance. Not brave enough or bothered enough for regular meds. Use propanolol when facing particularly stressful days. Suspect my essential tremour is a little worse.

Changed me as a doctor. more sympathetic towards unexplained symptoms, more openminded towards new syndromes. Also I am now very keen to remove any waits for diagnostic tests.

Best of all I now know both on a rational and emotional level that I do not have MND. Whoopee! getting on with life and into skiing. SKI = spending kids inheritence.

Thanks again for this wonderful site and those who give support

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Postby Schuey on March 21st, 2007, 4:35 pm

Glad you are doing well CJH!
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Postby kit on May 3rd, 2007, 3:22 pm

I am also a Doc and started with the twitching about 4 months ago. Started in my feet and calves and then went everywhere. Had my husband (a doc), my mom (a doc) as well as a number of Doc friends stregth test, reflex test, test dermatomes, run every conceivable lab...and you guessed it...I am the epitome of health. As far as the labs, my picture should be next to normal in the books:) I had myself convinced that I had ALS. I figured MS would be a godsend compared to that. I had myself a wreck and we won't even cover how crazy I made my family. My neurologist told me that he really didn't see the need to do the EMG. Of course when it is just the twitch, I can deal with it..sort of. It's the cramps and the "weak sensation" that I can't really make anyone else understand. I did great about a month and a half ago and thought I had this thing licked and then I suffered an exacerbation and I am back to battling what my rational mind knows and what my anxiety is telling me and of course an extensive collection of med books to essentially diagnose myself with a ton of stuff. Not much into this type of stuff but just felt like I needed to hear from some others who are twitching. Like I told my husband...you can't be *beep* if you ain't twitching. Thanks for all of your posts that I have read. It is nice to know that you aren't alone:)
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Postby Chipper3 on May 7th, 2007, 7:29 am

I am 47 year old physician radiologist with bfs. The best thing is this site to know that you are not alone. None of my hospital physicians knew about bfs and the neuro doc only a little. I think the best reasearch is coming out of England under perpheral nerve hyperexcitability syndrome. Check it out.
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Postby fate_777 on May 8th, 2007, 1:20 am

hey CJH, being an EMT I can relate to the having medical knowledge of what the "bad" things twitches can be, and being focused only on that, and "knowing" you have that. I have had this for about 6 years or so. and starting off I was scared to death. I just knew I was going to die. even though I knew the chances of a 25 yr old having ALS was slim to none.

I have a friend who is a neurologist and he also has it. and what is kinda funny is that he said even though he should have known better, he was convinced he had ALS, even though he knew he had no symptoms of it. but he was convinced the twitches meant he had ALS. he said he would even test his reflexes every day. and would test strength every day, just waiting to find that weakness that he "knew" would happen. finally he he said his wife basically told him you dont have ALS you idiot so quit worrying. he has had it for I think about 7 years.

I think there seems to be a lot of people in medical field with BFS, because they know what twitches can mean, and worry about it, and get checked out. while I bet there are people with no medical knowledge twitching for years without giving it a second thought.

I kinda wonder if its possible in some cases to be heriditary. my dad twitches also. and he said he started twitching shortly after he got home from Vietnam. so even though people will argue if "gulf war syndrome" is real, a lot of gulf war vets have neurological symptoms with no explained reason. so Vietnam vets could have the same thing. he could have been exposed to something there that set off the twitches, who knows. or maybe its just coincidence my dad also twitches.
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Docs and BFS/PNHE

Postby CJH on May 8th, 2007, 2:01 am

Thanks for your posts. Why so many docs? Well perhaps the job is very hard now. Little deference, greater scrutiny, fear of litigation and complaints, attack on professionallism, less job security, expert patients, less tolerance of ill health despite more of it in older people..

So perhaps this is a result of extreme prolonged anxiety in response to difficult situations. Given the the age people seem to get it suspect that there is a compoment of aging or degenerative disease to either the neuro-muscular end or to the immune system that facilitates the change from normal to twitcher, then perhaps an infection?? or abnormal repsonse to common viral infection. Who knows? and perhaps who cares?

It may actually be a good thing for docs!!!! Made me very keen to drive down delays in tests for patients in the UK. Made me understand patients with various somatic symptoms with more sympathy to add to empathy! Made me get my anxiety levels sorted. Stopped me over working!!

Feeling v positive about this at present. Hope it lasts.
Thanks again for everyones comments and support.

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To all my comrades in arms in the medical profession;)

Postby kit on May 8th, 2007, 11:15 am

The Mayo Clinic study on this did note that the majority were individuals in the health care profession. They just weren't sure if it was because more of us like you said, know the bad stuff so we are less likely to "ride it out". I am personally a firm believer in the viral theory. I can tell you that in 16 years of practice I have seen some odd things and they seem to be getting odder. Also tremendous amount of autoimmune issues of late. Maybe we are just ahead of the evolutionary curve :lol:

I can certainly understand the frustration of patiets who need to be tested and either can't or their physicians don't take them seriously because it doesn't seem to make sense. I had always prescribed to the thought that if the patient told me they felt something, they were the only ones living with it so they had to be right. My docs here and they are dear friends as well, don't know what to call what I have but they are certain it is benign. So I will continue to live my life, love my family and care for my patients. It is a comfort to hear from others in the field though.
All the best,
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Re: Even rational Docs get worried

Postby CJH on October 13th, 2014, 11:23 am

Long term update.
OK now 2014, Despite BFS and some worries about being made worse by exercise, I have transformed my life and live with the disease as a reminder of my mortality and being older. IN 2008 I took up running. Hated cross country or any distance running as a child. Inspired by the story of Jane Tomlinson I trained and entered a 10K….then another later in the year. 2009 2 x 10K and then did the Great North Run (half marathon)…getting addicted. 2010, started to train regularly and had a few issues with cramps in calves including a tear in a 10K in London. Learned that a 15stone guy in mid forties needs to treat body with respect. By 2012 was up to doing my first marathon. Did 2 more in 2013. Did three this year. So I still have problems very severe cramps after long exercise and also at work. But I am fit determined not to be restricted by BFS, more resilient and more open and understanding to my patients. Carpe Diem.
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Re: Even rational Docs get worried

Postby mwagner on October 13th, 2014, 3:40 pm

What a fantastic post. Thanks for coming back and taking the time to write this. You're definitely an inspiration that we can't let our bodies be defined by BFS. I know, for myself, my workouts have only gotten softer and easier due to BFS, because I hate the amount I twitch post-exercise. But your idea of not letting that get to you, is such a good one.

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Re: Even rational Docs get worried

Postby jebmd on October 16th, 2014, 7:31 pm

Hi there,
Nice to see another doc here. I am a family physician in Alberta, Canada and have been twitching for one year. It has been a DREADFUL year for me. The twitching of course started all the usual anxieties about ALS-one classmate from high school, one teacher from high school, one distant relative (not blood related) and one relative not so distant who was in the bloodline had all died of this disease ages 45, 61, 87 and 47 (my current age). So my mind went crazy-so much so that I called the neurologist I refer to for EMG testing and had her do one for me and then another one 3 months later-both totally clean, not even a fasciculation. I have continued twitching though and am booked for a "one year follow up" in December. I do have weakness in my left leg (likely an L5 radiculopathy) but it seems to be settling with exercises and medication and my strength appears to be improving. I also notice increased twitching in the calves after exercise and this always makes me nervous-but I will not stop. This year, I was diagnosed and treated for thyroid cancer, no radioactive iodine needed, lesion very small and confined to the thyroid. I am on synthroid for suppression. I am also B12 and Vitamin D deficient-monthly injections for B12 and 2000IU/day Vitamin D + 500 mg calcium due to damage to 2 parathyroids as a result of surgery. Interestingly, my thyroid nodules were discovered incidentally on CT scan, done due to my anemia and drastic weight loss, after a normal colonoscopy and gastroscopy, to rule out occult abdominal or chest malignancy. The twitching started after this. I never would have thought of the thyroid as there is NO thyroid disease of ANY kind in my family. The BFS forum has been a godsend for me although I do not post often and do not visit often either, but when I need it, it is there.
Congratulations on your marathons-personally, I hate running but am happy to be walking again after all the leg pain and weakness I had after my surgeries, then my very intense visit to the UK last summer-you people love stairs that's for sure especially in central London and on the tube.
So carry on, and I hope that at some point (maybe in 2 years or so) I can call myself a "rational doc" as well-I am not there yet unfortunately.
Cheers and good luck in your races,
J
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Re: Even rational Docs get worried

Postby misterjuanperalta on October 20th, 2014, 3:25 pm

Condolences. My prayers are with you.
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Re: Even rational Docs get worried

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