First Post... Need the help of others

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.

Moderators: JohnV, Arron, garym

First Post... Need the help of others

Postby Gamindsoc1509 on December 19th, 2013, 3:44 pm

Hi all... Been going through this for 3 months now and reading forums constantly. Would really love some specific advice or thoughts to my situation... Thanks in advance.

Age : 24

History - I have had phase based health anxiety all my life. I am generally very rational however. I worry about the POSSIBILITY of the disease. I do not walking around saying I have it and visiting 20 specialists...

The latest is ALS and the progression of symptoms is as follows -

6 months ago I came down with the flu. This turned into bronchitis. This turned into severe chest pain which turned out to be two fractured ribs (believed to be from coughing badly and a vitamin d deficiency which i'm now taking tablets for). This is the sickest I have ever been in my life.

3 months ago (towards the end of my constant sickness) I started getting twitches body wide here and there all day. No real hot spots and in all sorts of weird places. I did not concern myself with it for about a week until I did some research and started panicking. I went through phases of panic. They stayed about the same except I was thinking I 'felt' a lot more since I was now focused on it.

At this stage ( around 1.5 months in) I saw a highly regarded neurologist. He dismissed me as anxious immediately, did a basic neurological exam and told me my nervous system is in over drive and I need to stop worrying. (First time I've ever been dismissed by a doc -_-. As I said, I do not usually go and see them.)

Around 1 to 1.5 month ago I noticed when casting shadows over my feet with a light that I am getting little twitches all through out the side of my foot where the big toe is. This is equal in BOTH feet. I cannot usually see much of it in regular light, casting shadows however and it becomes very clear.

Around a few weeks ago my toes started feeling funny. I'd be aware of how they were sitting and it would bother me (in my right foot). This drove me crazy and I dismissed it as hyper sensitivity and focusing too hard on my foot.

However, I train a martial art called capoeira and in the last 3 lessons my LEFT big toe has started cramping. To the point where I need to stop training towards the end of class. It starts having little spasms and leading to what is a cramp, I usually stop before the cramp hits. The twitching always gets a little more intense after training as well.

Meanwhile I still get body wide twitches throughout the day every day.

Does anyone have any information I might find useful? Very over this. I should mention that the general body wide twitches usually do not last long (On rare occasion they will continue for up to 5 minutes)


Thanks all and I appreciate any information you might give. I should note, I am at this point very well researched on ALS (For a non professional). I understand that between my age and the presentation of twitching and some cramping with still no weakness after 3 months the likelihood of ALS is quite low however it still causes me worry.) The information available on twitching is and how it relates is often very different...
Gamindsoc1509
Senior Member
Senior Member
 
Posts: 96
Joined: December 11th, 2013, 9:10 pm

Re: First Post... Need the help of others

Postby leaflea on December 19th, 2013, 6:06 pm

Welcome to our club. I have no answers for you but certainly think you fit into our profile of 1. health anxiety 2. recent stress 3. serious worry/panic after research 4. typically high functioning and rational except when it comes to this 5. fine and frequent twitches in the foot

I echo your last statement...information is often contradictory and I think that adds to our anxiety and confusion about this. It also erodes our confidence in the professionals because they do not seem to agree.

*One source will say twitches in feet and calves are almost never ominous, another will say most als twitches happen mostly in the hands and feet. Others say the most concerning ones happen in the shoulder girdle. Others say abdomen. Others say thigh.

*Some sites say weakness is gradual, others say it is rapid... (It must be gradual...every muscle group has ratings +/- 1-5 strength. Those with als go back to check progression using that scale) this makes it more difficult to know if weakness is perceived or clinical. I am feeling SO weak today, but I am also noticeably more anxious and very low on sleep.

*Some say clean EMG = no als, some say must also have normal exam

*Some say weakness precedes atrophy, others say atrophy precedes weakness

*Some say bodywide twitching is bad, some say it is a good sign

*Some say EMG rules out, some say EMG confirms

Other contradictions? Clarification? Has anyone here satisfactorily synthesized all the available information? I think not.

many sites blame the benign causes on electolytes or lack of sleep yet almost none of us have had success with the simple remedies for those simple things.

I, for one, really do believe in my soul that this syndrome is a poorly understood manifestation of anxiety, or as your MD said, an "overactive nervous system" either caused by or causing stress and anxiety. The fact that it shares symptoms with such a sad disease is an unfortunate twist of fate (or kick in the shin) for those of us who suffer with it that only adds confusion to the anxiety. I think it is a combination of a psychiatric problem with real neurological symptoms or a neurological disorder with real psychiatric symtoms --- a mind/body problem. So, it makes sense a mind/body (alternative) medicine might be the best solution. Most regular doctors do not have time or patience for this kind of thing that does not have textbook causes, symptoms, or treatments. We have to think outside the box...gluten free is next for me and lymes testing I think...once I get a normal neuro exam that is.

All the best
Matthew 6:27 Who of you by worrying can add a single hour to his life?
User avatar
leaflea
Saint
Saint
 
Posts: 525
Joined: November 12th, 2013, 2:06 pm
Location: Minneapolis, MN

Re: First Post... Need the help of others

Postby mwagner on December 20th, 2013, 11:42 am

I wanted to point out that many, many, many people on this board started twitching after a viral illness. This sounds like you. You sound completely benign to me.

As Leaflea is correct, there are lots of contradictions out there, but you should trust your doctor. You fit the profile of most folks on this board. Try to rest easy that you don't have anything sinister

I do want to correct something Leaflea said so people aren't worried. Twitches in the hands and feet (and calves) are possibly the most common type of twitches, aside from the calves. There was a study done that showing that a majority of normal people have fasciculations in their feet. My neuro refused to give me an EMG in my feet (after doing my legs) because he said that there is so much traffic there, for everyone, that it was likely to be dirty.

Bottom line, with BFS, you will twitch everywhere. It's so important to realize that. I, personally, don't believe that location matters whatsoever. Unfortunately, we share hyperexcitable nerves as a feature with one of the worst illnesses known to mankind. With hyperexcitable nerves, you can and most likely twitch everywhere. Or it might be localized. And, that's okay. We share a feature, but in our case the hyperexcitability is due to benign causes. It's important to realize this, because it's easy to freak out when a new twitch arises (I have done that and unfortunately continue to do so after 2.5 years due to my stupid anxiety) and you read somewhere on this board, that that location is worse than any other location. I have twitched in the strangest places, like the bridge of my nose, my eardrum (really annoying), etc.

Please try not to worry. I know it's easier said than done, and most of us continue to worry even past clean EMGs and years passing with everything being okay. Many of us have health anxiety and this is especially scary to us, mainly because neurological symptoms can be very, very weird and out of our control. Try not to let this get the best of you.
mwagner
Saint
Saint
 
Posts: 1066
Joined: August 27th, 2011, 5:15 pm

Re: First Post... Need the help of others

Postby Gamindsoc1509 on December 22nd, 2013, 9:19 pm

Thanks guys, I do appreciate what you have to say.

It is very difficult. I also have essential tremor and I did read that people with essential tremor have a higher risk of developing BFS. Both essentially are benign neurological conditions.

Might include a few random facts. When I had my bloods done 3 months ago I had a few abnormal features. One being low vitamin D (I fractured 2 ribs during the bronchitis I had). I have been on supps for 3 months and this has not changed the twitching. I had a slightly elevated thyroid. I also had a very high level of liver bilirubin. The doctor said this was nothing, some people have it high and were most likely born this way. If it's that high with no symptoms its no concern. Wondering if these ring bells for anyone else? I have had the re-test done on my D and thyroid but am not getting the results until next week. Doc will put me on meds for the thyroid if it is still high.

On a final note. I am assuming it is normal for the twitching to go crazy after excercise? Mine does in my feet.
Gamindsoc1509
Senior Member
Senior Member
 
Posts: 96
Joined: December 11th, 2013, 9:10 pm

Re: First Post... Need the help of others

Postby Gamindsoc1509 on December 22nd, 2013, 9:19 pm

Thanks guys, I do appreciate what you have to say.

It is very difficult. I also have essential tremor and I did read that people with essential tremor have a higher risk of developing BFS. Both essentially are benign neurological conditions.

Might include a few random facts. When I had my bloods done 3 months ago I had a few abnormal features. One being low vitamin D (I fractured 2 ribs during the bronchitis I had). I have been on supps for 3 months and this has not changed the twitching. I had a slightly elevated thyroid. I also had a very high level of liver bilirubin. The doctor said this was nothing, some people have it high and were most likely born this way. If it's that high with no symptoms its no concern. Wondering if these ring bells for anyone else? I have had the re-test done on my D and thyroid but am not getting the results until next week. Doc will put me on meds for the thyroid if it is still high.

On a final note. I am assuming it is normal for the twitching to go crazy after excercise? Mine does in my feet.
Gamindsoc1509
Senior Member
Senior Member
 
Posts: 96
Joined: December 11th, 2013, 9:10 pm

Re: First Post... Need the help of others

Postby leaflea on December 22nd, 2013, 10:48 pm

Hi Gaminsdoc,

Here is an example where this site is helpful. I was relieved to see you say your feet go crazy after exercise as mine have also. I am relatively new (a few months in) to this disorder and noticed my feet having tiny flickers all over the place the other day after exercise. However, the next time, I could barely see one. In my earlier post on this thread, I did not mean to say any location is more worrisome than the other. My point is that it really seems the location of twitching makes no difference, as mwagner said. The shoulder girdle is practically the entire upper body. What I have read has covered every area, including feet which MOST sources agree are benign (but I managed to find one that said feet and hands are bad). My other point is that they all contradict one another and they don't agree and don't seem to apply to bfs anyway because no one seems to know much about it. BFS is supposedly most common in eye, calf, and thumb. I have not had the thumb or tongue (yet), but just about everywhere else.

I don't know much about the lab values. I do know that some like magnesium are not reliable figures. Most will have normal blood levels but that tells nothing of what is stored in tissue and bone.
Matthew 6:27 Who of you by worrying can add a single hour to his life?
User avatar
leaflea
Saint
Saint
 
Posts: 525
Joined: November 12th, 2013, 2:06 pm
Location: Minneapolis, MN

Re: First Post... Need the help of others

Postby emmie.s on December 22nd, 2013, 11:10 pm

I too tend to have elevated bilirubin. My gastro doc ran tests and said it was due to Gilbert's (which is a benign inherited condition) but didn't bother with genetic tests that would give me an absolute conclusion that it's Gilbert's. I think it's autoimmune and diet related, and the elevated bilirubin and twitching are due to inflammatory foods that I uses to eat (gluten being the main one) plus anxiety.
Yes, twitching after exercise is very common for everyone, not just BFSers.
Welcome to the board, and I'd work on a symptom journal to see if there are any triggers such as foods that cause an uptick in your symptoms, and of course work on reducing your anxiety.
User avatar
emmie.s
Hero
Hero
 
Posts: 363
Joined: February 17th, 2009, 9:33 am

Re: First Post... Need the help of others

Postby Gamindsoc1509 on December 22nd, 2013, 11:27 pm

To be honest, I am not that anxious in general.

I have phased based healthy anxiety if that makes sense. So, there was an MS scare, a brain tumor scare, etc, etc when I go through phases of being freaked out and scared of the symptoms.

Day to day however, I am completely functional, active and social and not anxious. It's only in regards to health scares that I go into panic modes. Is this normal for BFS'ers? Hopefully this doesn't come across as rude, I just want to paint a real picture of myself.

I am not the type to go see 10 specialists, a pysche and takes medication, etc. Generally time wears down my anxiety however this would be the longest running period of anxiety and most likely due to the fact that I do have a real symptom that isn't changing. (The twitching)

But as I said, this did occur after a period of being sick for 3 months (I wasn't very anxious, but my body was physically stressed) FOLLOWED by intense anxiety because the twitching had been their daily for a week.

This is all very interesting stuff. Appreciating all the comments.
Gamindsoc1509
Senior Member
Senior Member
 
Posts: 96
Joined: December 11th, 2013, 9:10 pm

Re: First Post... Need the help of others

Postby leaflea on December 22nd, 2013, 11:41 pm

Exactly like many of us. High functioning in daily life and in most areas. Without much anxiety except as is expressed somatically and also with Health Anxiety. Read around, you fit our profile. I think I mentioned that in my second line of my first response on this thread. Not necessarily like all folks with BFS, but a majority of us on this board.
Matthew 6:27 Who of you by worrying can add a single hour to his life?
User avatar
leaflea
Saint
Saint
 
Posts: 525
Joined: November 12th, 2013, 2:06 pm
Location: Minneapolis, MN

Re: First Post... Need the help of others

Postby veryworried123 on December 23rd, 2013, 12:03 am

I too have high billirubin and it seems like some of here do
I wonder how many people have it and if there is any coorelation

Mind you my billirubin went down to the normal range and I was still twitching so who knows

I'm not sure if mines anxitey related but I'm thinking it's not
I think there is some else that making me twitch
veryworried123
Hero
Hero
 
Posts: 303
Joined: December 10th, 2013, 2:28 pm

Re: First Post... Need the help of others

Postby Gamindsoc1509 on December 23rd, 2013, 2:48 am

Thank you, yes just wanted to check.

It is very interesting isn't it? You know know that I think about it, this is very similar to essential tremor. (The only difference being that essential tremor is MUCH easier to separate from other deadly disease and has no close cousins as deadly as ALS).

No one knows what causes essential tremor. It is elevated when tired, fatigued, anxious, scared, etc. I suppose there is just less fear around it.

Surprised they cannot work out what BFS is. I know it's been said before but it just doesn't get enough funding :'(
Gamindsoc1509
Senior Member
Senior Member
 
Posts: 96
Joined: December 11th, 2013, 9:10 pm

Re: First Post... Need the help of others

Postby Gamindsoc1509 on December 23rd, 2013, 3:36 am

Actually guys, I wanted to know if people can provide a little more information on cramping.

As I mentioned I have twitching constantly in both feet (might need to shine a shadow across my feet to see them) and my RIGHT foot started feeling 'funny.'

At the end of one capoeira class, I was stretching my feet in awkwardish ways and my LEFT foot big toe had a full on cramp. Since then, when I start doing capoeira and get into it after a while, I feel the cramp feeling coming on. However I have been stopping before the cramp actually occurs (gotten very close). I generally now feel this coming on when I get moving and doing something strenuous on my feet.

This has only been 1.5 weeks so can't say much, but does anyone have experience with this? The cramping scares me a little more than just the twitching. I haven't actually had a second cramp though, I have relaxed my feet before they occured.

EDIT: Just to add. The reason I asked this just now is because I happily got up and...let's say danced. This dancing involved my feet a lot! I started to feel the tightness in my left toe come on again (No feel of cramping though).

When I take my sock off, you can see my big toe is just twitching away (usually the twitches don't move my toes). And when I shine the line the hold side of my foot is losing it's mind. It's as if the area just starts twitching so much that it leads to a cramp! Anyone with similar info or experiences would help. Also, how can I control it! Capoeira is my favourite thing to do and a foot cramp is going to cause me issues if it happens every time.
Gamindsoc1509
Senior Member
Senior Member
 
Posts: 96
Joined: December 11th, 2013, 9:10 pm

Re: First Post... Need the help of others

Postby leaflea on December 23rd, 2013, 10:49 am

If you search around here foot cramps incredibly common both with bfs and without. I had fierce foot cramps over the summer. Often in the middle of the night. Had them for years also on occasion before twitches ever started this Fall. My mother is the same. Feet, calves, many decades now even in her thighs in her 70's. Chiro explained to me the reason these often happen in the night is that is when our nutrition is at lowest levels, essential minerals etc.
Matthew 6:27 Who of you by worrying can add a single hour to his life?
User avatar
leaflea
Saint
Saint
 
Posts: 525
Joined: November 12th, 2013, 2:06 pm
Location: Minneapolis, MN

Re: First Post... Need the help of others

Postby Gamindsoc1509 on December 23rd, 2013, 7:48 pm

I suppose the reason these concern me is because I've hardly ever had any cramps in my entire life. They have just started where my twitches are after excercising. But since cramping is a part of BFS I am assuming the twitching has something to do with it. Just curious if others had similar experiences.
Gamindsoc1509
Senior Member
Senior Member
 
Posts: 96
Joined: December 11th, 2013, 9:10 pm

Re: First Post... Need the help of others

Postby emmie.s on December 23rd, 2013, 8:56 pm

Yes, I was a foot and calf cramper. I remember being very upset because the cramps came on on the left side of my body and I had only got a right-sided EMG. So, three months later I got it a left side EMG which was also clean and lo and behold the cramps went away. I took quinine, b12, magnesium, and calcium and also changed my diet and bleak outlook, so who knows what helped. Good luck, you're not alone!
User avatar
emmie.s
Hero
Hero
 
Posts: 363
Joined: February 17th, 2009, 9:33 am

Re: First Post... Need the help of others

Sponsor

Sponsor
 

Next

Return to Experiences with BFS

Who is online

Users browsing this forum: No registered users and 3 guests

cron