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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Even rational Docs get worried

Postby CJH on February 9th, 2006, 10:28 am

[color=green]First thanks to everyone for a brilliant site.
I am a 41 year old physician and gastroenterologist in Yorkshire England. I have had symptoms for the past three months. Previously I have known that I have benign essential tremour since I was a teenager. My father also has the same tremour problem currently.

I first noticed twiches when relaxing in the bath well before Christmas and some occasional cramps in my forearms when driving often feeling very warm in the muscles.

I initially dismissed my symptoms but after a fantastic holiday I returned to work and started noticing twitches in calves legs abdomen and back much more regularly. After several days of awareness I started reading both my old medical text books and plundering the internet for information. This is when anxiety kicked in with a vengance I convinced myself I had motor neurone disease or ALS. I spent a whole weekend not sleeping and even found an excuse to return to my office at work and get more information. I found ALS sites and wept openly about my fate. Convinced of my diagnosis I sort out my neuroloist colleague the following day. He reviewed me. I was in no state to work and I was sent home. He did examine me found no weakness and arranged an EMG. That thankfully showed fasciculations only with no evidence of denervation. However my symptoms were now really starting to kick in.

Over the next four weeks the cramps started many areas and the twitches changed from solitary to repetitions at severeal sites. At each worsening the doubts over the "benign" diagnosis grew. I started b-blockers for anxiety and have had some psychotherapy.

Most annoying of all is the disturbance of sleep which seems to interfer with my attempts to become much more rational about this and exhausts me. My wife has been a great support, not least finding this site (which I use as a reality check). Crucially I am not the only one with the symptoms or the fears. Pretty down about the length of symptoms for many sufferers but hopeful I will be a lucky one. My training and knowledge as a doctor is no protection for me however I think I have just realised how terrifying being a patient can be. I hope that this will give me a greater understanding in my work.

Currently I have had five days of almost constant twitches from my right thigh. I suspect that this is not uncommon and wonder how many others get this and how long it will last?

Anyway I have found writing my first post useful. I hope it will help me stop testing my muscle strength or considering getting my colleagues to run neuro exams on me.

Anyone who wishes to contact me please do so I could use some "grounding"

Thanks CJH
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Postby SuziQ on February 9th, 2006, 10:44 am

CJH,
Thanks for posting, I so appreciate your story. I'm a nurse and my symptoms were more weakness and tingling than twitching so I had myself terrified about MS several times over the past 8 years.

You are right, we in health care are far from immune, if anything we've seen and know too much, plus we figure why would we be exempt just because we've treated folks afflicted with all manner of horrible diseases?

I'm semi-retired (I work part time for an hmo,) but I've had my share of exposure to enough people with bad stuff (not really *LS so much, but certainly MS,) that I can fully relate to what you are saying. I drove my doctor-friend buggy making him order me every conceivable test, so certain was I that they were missing something. In addition, most of the neuros I encountered had never heard of bfs, so it wasn't even suggested as a viable dx in my case until the bitter end, after I had driven myself and all of my friends, family members and physicians insane, lol. I had to diagnose myself after reading "bfs in a nutshell." I've been virtually symptom free ever since.

It does help us to see our patients, and people in general in a more compassionate light, doesn't it though?

I'm glad you found us, welcome...the people here are beyond friends...they are family.

Blessings,
Sue
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Postby klag on February 9th, 2006, 10:54 am

hi cjh, i suggest u read bfs in a nutshell for all the info. as far as lasting, some people here have been twitching for many years. I my self since sept 05. there is lots of good people here that are willing to help and share experiences. :lol:
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Postby wjjw on February 9th, 2006, 11:22 am

CJH wrote:Currently I have had five days of almost constant twitches from my right thigh. I suspect that this is not uncommon and wonder how many others get this and how long it will last?

Hard to say, and not at all uncommon. Many people here have hotspots that continue for days, months or longer. Some have twitches that go 24x7x365, so everyone is different. I also had the forearm aching/cramping when this started, for about 2-3 months. It finally stopped and has recently moved to my calves. I thought for sure that exercise would make them worse, but I was really surprised that increasing my walking actually made them a little better (or at least did not have a negative impact).
A knowledge of the existence of something we cannot penetrate, of the manifestations of the profoundest reason and the most radiant beauty, which are only accessible to our reason in their most elementary forms--Albert Einstein
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Postby wjjw on February 9th, 2006, 11:45 am

BTW, in case you haven't seen it, member stevepaul has some excellent information on his website here.
A knowledge of the existence of something we cannot penetrate, of the manifestations of the profoundest reason and the most radiant beauty, which are only accessible to our reason in their most elementary forms--Albert Einstein
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Postby ryanbabs on February 9th, 2006, 1:26 pm

Welcome aboard. I have seen many of you guys in the past...I had a Billroth II duodetomy with a vagotomy...I always wondered if this could have something to do with my symptoms...tremor, twitches, muscle pain, etc.

I had a major bleeding ulcer...no H. Pylori was ever found either. They never really told me why I got it. That was 10 years ago almost exactly. I was only 20 years old also.

I was also misdiagnosed several times with back problems, etc...I had "muscle pain" all over my trunk area (chest, stomach, back) but nowhere else. I never felt nauseous or anything either.

It was a blood count test I had that finally showed that something was wrong...after I started looking really pale and losing blood. Then I went and saw a gastro...

Just wondering if you could see any connection (malabsorption, etc). I also frequently (about once a month) would get hypoglycemia episodes, where I would start shaking and crave sugar (or food) after the surgery.
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Postby Morne on February 9th, 2006, 3:20 pm

Hi there CJH,

It ends up being a waiting game... It is terrible to experience these feelings.

I am sorry about the fact that you are also struck by this phenomena. Most, if not all the symptoms you describe is very typical of what I get, and judging by what other people here have to say, they too.

It is reassuring to not feel so alone. I mean, just the fact that you, as a medical professional posted your story, helped me get some new perspectives.

I truely wish that you can find sollice here!!

Who knows... your journey may be one that might lead to some important medical breakthroughs!!

Regards from South Africa,

Morne
It is a long walk to freedom, and the road is dark and winding...
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Postby Wolverine on February 9th, 2006, 5:05 pm

CJH,
I do not have constant twitches in my right thigh but I do have them on my thumb pads. I get bodywide twitches, but the most predominant ones are on my thumb pads. I didn't think much of my twitches until I started getting them there because they didn't relent. I have had them pretty much constantly for the last 2 months. The severity of them changes but it seems as if they are always there. Especially after I run. Everyone on this board calls them "hotspots" and I think many people have had them in their thighs. I do sometimes get twitches on my thighs.

I also had a similar experience as you as far as the symptoms getting worse with anxiety and I know others here have also. When I first scheduled my appoinment with my GP I was not worried until he ordered a EMG. Then, when I got home and googled what a EMG test was for, I freaked out. I wasn't worried about ALS but I was convinced that I had MS after reading about nuero diseases. WOW did my sypmtoms go through the roof after that! After googling MS symptoms I new I was in the clear because I didn't have any visual problems. Guess what happened to me the next day. I started having visual problems. That threw me into panic attacks and my eyes, muscles, and my whole body in general felt horrible for about 3 weeks. That's what the brain can do to you.

Now that I have started coming down from my stress, my physical problems are about where they were before I first went to see my GP and these symptoms are very manageable. So please try to calm down and believe what your colleage has told you. Good luck.
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Postby jcavan4125 on February 9th, 2006, 7:19 pm

Hi CJH,
Welcome to the board! This is probably the greatest concentration of twitchers in any one spot in the world. Everyone is willing to help, and has alot of similar stories to share. In regard to your symptoms, remember that a normal physical exam and normal EMG rules out a Motor Neuron Disease. I too am in healthcare and understand that it is no protection from anxiety. I was as convinced as you that I had ALS. In spite of the fact that I had no weakness, and was actually getting stronger every week in the gym, I couldn't sleep and was strssed to the max for 5 months. I figured at that point any evidence of denervation would certainly show up on EMG, and I forced myself to go see the neuro. He practically laughed at me (though he restrained himself), reminding me that the primary symptom of ALS is weakness not fasciculations. All that twitches is not necessarily bad! Once again, welcome.
Joe... "That which does not kill us makes us stronger"! - Nietzsche
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Postby Christina on February 9th, 2006, 7:45 pm

Hi CJH,

Welcome. I wish I was welcoming you to the happy. no worry, disney site or something like that. But alas, it is the bfs site. We have all been terrified or are terrified at any given time. The support is terriffic and as Sue said we are like a family. Nobody understands what we go through but us.....so whenever you fall a little there is always someone here to catch you, and give you a cyber kick in the butt.

You will be fine. :D

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Postby wjjw on February 9th, 2006, 8:09 pm

Christina wrote:there is always someone here to catch you, and give you a cyber kick in the butt.

Just don’t try giving yourself a kick in the butt, like some of us did yesterday. :roll: Never mind ... don't ask.
A knowledge of the existence of something we cannot penetrate, of the manifestations of the profoundest reason and the most radiant beauty, which are only accessible to our reason in their most elementary forms--Albert Einstein
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Postby Dianna on February 9th, 2006, 8:30 pm

Bill, I know what you mean :wink: I now have a couple soar spots
right in the middle of both cheeks. :(

Dianna :)
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Postby dave y on February 10th, 2006, 12:46 am

Welcome CJH,

Those constant twitches we call "hotspots" and they can go on for days or even months. I've had a hot spot on my tongue for months now (I've had this for seven years and have had plenty of EMGs with no negative signs). You can twitch in any muscle, so don't worry when a new one becomes involved. It's just best to not worry at all. My neuro was much more concerned about my anxiety over the twitching than the twitching.

This will wane, but unfortunately, for most it will take years. It probably won't ever go away, but it does become like background noise after a while and you don't notice.

Check out the Mayo paper on benign fasciculations, it's very reassuring. Also, to the best of our knowledge nobody on this board or over at braintalk has ever been given a benign dx then gone on to get MND. Benign fasciculations are much more common than motor neuron disease and since you've had a clean EMG and clinical exam the odds are so heavily stacked in your favor that you really ought not worry. That's the challenge.
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Postby Schuey on February 10th, 2006, 3:27 am

Welcome, CJH. I was going to suggest what Davey has already suggested above.

I am a chiropractor and I have pestered colleagues repeatedly to do complete weekly neuro exams on me for years!I have twitched for about 11 years now!

My best advice is to read the research. It really is reassuring. You have had the benefit of seeing colleagues who are neurologists. They wouldn't tell you you were OK if you were not. You have had an EMG. If you check out the Cleveland forum, there are many, many responses by neurologists on there about EMG. To sumarise though, they say it is never too early to have an EMG, if a patient has Sx and they are related to NMD, then it WILL show up on EMG. MY neuro also confirmed this. That no one they have tested with a normal EMG has EVER gone on to develop MND.

Kind regards,

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Thanks to all posters!

Postby CJH on February 10th, 2006, 3:33 am

Slept better! Feel vindicated! Inner smile returning
Both this site and the pnh one really help.
Having people reply directly to you also adds further!

Still had my morning moment though ie just before weight bearing then relief as I walk over to the shower. Makes one mindful of having a working system is better than not!

Cheers again
Hope to contribute to the community and support other now after all your help.

CJH
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Thanks to all posters!

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