Help!! BFS or something more sinister?

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Help!! BFS or something more sinister?

Postby Nathan75 on April 29th, 2014, 2:07 pm

Hi one and all.

Over the last 2 and a half months i have been experiencing widespread fasciculations, amongst many other symptoms.
The fasciculations first started in my legs, but have since spread to most parts of my body. There isn't really any part of me that doesn't twitch from time to time, even my eyelids twitch, but over the last couple of weeks or so the most constant twitching is going on in the arches of my feet. When i closely examine them it almost looks as if their is an electrical storm happening in them. A few days ago my left foot was twitching so much my little toe started involuntarily moving.
I have been worried sick over this because i did the worst thing possible when the twitching first started and looked on google, and of course all sorts of dreadful diseases were shown.
I have tried magnesium/calcium and vitamin supplements but apart from very slight relief the twitching continues to be bothersome.
Along with the fasciculations i have had lots of other symptoms including... pins and needles/electric shock type feelings, limbs falling asleep (especially at night/first thing in the morning) muscle pain/cramps (especially in my legs), jolts, tremors (although they seem to have eased somewhat over the last few weeks), cracking joints, lump in the throat sensation, anxiety, and sleeping problems.
I tried to ignore all these things at first but after 2 weeks i went to see my local doctor. He gave me medication for anxiety but prescribed nothing for the fasciculation etc.
I also have seen a neurologist 2 weeks ago. He ran a series of simple tests/tasks whilst i was there, and he also checked my reflexes which he said were all fine. He said that in his opinion he had no reason to suspect there was anything seriously wrong with me, but he has ordered me to have an EMG which will be carried out on the 17TH MAY 2014. I think he only ordered me to have an EMG because he could see just how stressed out i was.

I am worried sick that i may have ALS or some other horrible neurological disease.

Do all the symptoms above sound like BFS?

I would be greatful to hear other members views on this.

Many thanks.
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Re: Help!! BFS or something more sinister?

Postby TwitchyDoc on April 29th, 2014, 2:22 pm

Sounds like typical BFS. The EMG will confirm it. Your story is typical - legs and then widespread onset...you are fine.
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Re: Help!! BFS or something more sinister?

Postby J4son on April 29th, 2014, 2:56 pm

Nathan, first welcome to the Board.

In my experience the first 2 to 4 months into BFS are the worst psychologically speaking, then slowly the beast will start to be tamed and you will feel better. The time factor is in my opinion very important, and no shortcuts here. You will be scared despite all the reassurance you will get from this board and your doctors, until you will start emotionally (and not intellectually) to accept that nothing sinister is going on.

You did the most important thing, and it’s seeing a doc and a neuro. Now you will have to start trusting that these guys know their stuff. When I travel by plane I assume the pilot knows what he is doing. When I see a doc I also assume he knows what he is talking about, especially if he is a neurologist.

Now, regarding your symptoms well I think it’s all normal BFS and nothing indicates something more sinister.

- Widespread fasciculation: Usually a good sign, (check the email from Pr. Andrew Eisen somewhere on this board).

- Eyelids twitches: Super common in the general population and harmless too. Mostly referred as Myokymia rather than fasciculation.

- Twitching in the arches of the feet: Very common too. You will also find a study on this board about the huge amount of twitching per minute in the arch of healthy people’s feet.

- Googeling symptoms: The reason why 90% of us are stucked here, instead of chasing colored butterflies over a green grassed mountain-hill. Most people who fear twitching are people who have rudimentary medical knowledge. Previously it was limited to med students, and today in the XXI century to any dude with an internet connection.

- Pins and needles/electric shock type feelings: Not a sign of ALS, I got that a lot in the first couple of months now they’re gone.

- Limbs falling asleep (especially at night): Again not a sign of ALS, but could be carpal tunnel syndrome or nerve entrapment.

- Muscle pain/cramps (especially in my legs): Cramps in legs and calves are extremely common.

- Jolts, tremors: Anxiety signs…I used to get those a lot especially during sleep. It disappeared now.

The most important thing is that you were cleared by your neuro. This alone have hundred times more value than everything you will read on internet or here. A personalized diagnosis is the only thing that counts because it takes into consideration you specific case and not some general data, like those you can find on Internet. Good luck with the EMG. I didn’t have one.
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Re: Help!! BFS or something more sinister?

Postby veryworried123 on April 29th, 2014, 10:54 pm

I agree with all above

Bfs is 90% mental

Reach out to senior members with questions

Thanks
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Re: Help!! BFS or something more sinister?

Postby nrwtwitcher on April 30th, 2014, 2:09 am

it sounds like typical bfs!!!
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Re: Help!! BFS or something more sinister?

Postby Nathan75 on April 30th, 2014, 6:15 am

Thank you to everyone for the replies.

I am really glad i have found this website. It has helped me a lot reading some of the other posts regarding BFS.

It is very comforting to hear that you all think it sounds like typical BFS, and also comforting to know i am not the only one suffering with these strange symptoms.

My main concerns at present are my constant twitching feet, and my legs (that is where the EMG is being performed on) because they constantly seem to be tired and in pain. Best way to describe them is that it feels as if they are bruised and have just ran a marathon.
Also the tingling/pins and needle sensations that i get all over my body is very annoying.

And yes, i agree J4son, i do seem to think that time will be the key factor for me in all of this, and of course once i have the EMG done i can then hopefully start to move forward.

Best of health to everyone.

Nathan.
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Re: Help!! BFS or something more sinister?

Postby leroyb on April 30th, 2014, 6:21 am

Time definitely helps Nathan. Absurd strength test def not.

I had all those leg feelings. Seem to be gone now though.

At it's worst I couldn't bear the feeling of material against my skin.
Last edited by leroyb on April 30th, 2014, 6:34 am, edited 1 time in total.
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Re: Help!! BFS or something more sinister?

Postby ShawnW on April 30th, 2014, 6:25 am

Nathan75 wrote:Thank you to everyone for the replies.

I am really glad i have found this website. It has helped me a lot reading some of the other posts regarding BFS.

It is very comforting to hear that you all think it sounds like typical BFS, and also comforting to know i am not the only one suffering with these strange symptoms.

My main concerns at present are my constant twitching feet, and my legs (that is where the EMG is being performed on) because they constantly seem to be tired and in pain. Best way to describe them is that it feels as if they are bruised and have just ran a marathon.
Also the tingling/pins and needle sensations that i get all over my body is very annoying.

And yes, i agree J4son, i do seem to think that time will be the key factor for me in all of this, and of course once i have the EMG done i can then hopefully start to move forward.

Best of health to everyone.

Nathan.


I truly believe BFS is a close relative of Fibromyalgia...therefore some of the symptoms overlap. When I was at my worst, I was so weak in the legs...my legs would even buckle when I walk. My shoulder was so fatigued that I couldn't shampoo my hair without difficulty. Unused adrenaline sitting on muscles and the nervous system isn't a good thing. Think about it this way...fight or flight system is a good thing unless its turned on all day every day. Muscles get fatigued, nerves get irritable and whoa and behold we have strange symptoms in these systems. It shouldn't surprise us. Get your anxiety under control and this all gets better...trust me on that one.
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Re: Help!! BFS or something more sinister?

Postby ShawnW on April 30th, 2014, 6:29 am

leroyb wrote:Time definitely helps Nathan. Absurd strength test def not.

I had all those leg feelings. Seem to be gone now though.


Strength testing during the midst of an anxiety attack is about the worst thing you can do. Its a great way of causing an overuse syndrome on top of everything else he is experiencing. I remember holding 10 pound weights between my index finger and thumb...(why are my hands so crampy!)...doing pull ups (why do my shoulders hurt so bad) etc and so on. We google then test...which is probably two of the worst things you can do...but it becomes very OCD like...and its hard to stop...always looking for that reassurance. Until we break that cycle this only gets worse.
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Re: Help!! BFS or something more sinister?

Postby Nathan75 on April 30th, 2014, 6:34 am

Thanks for the info leroyb.

Yes, i am guilty as charged. I have done all the crazy tests, i.e walking on tip toes/heals of feet etc. I must stop doing stuff like that :!:

How long did you suffer with the leg symptoms? And was the discomfort in both of your legs?

Nathan.
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Re: Help!! BFS or something more sinister?

Postby leroyb on April 30th, 2014, 6:39 am

Felt in both legs forabout 8 weeks. The odd day it would totally disappear. It felt like someone had soaked a pair of heavy jeans in hot water and I was wearing them.
When I excercised I would be fine but pay dearly afterwards. Any fabric touching my legs would aggravate it.

Forgot to add my my quad above my left knee was numb for a lot of that time and feeling only returned to it recently.

I found stopping the strength testing nearly psychologically impossible. I still am not fully free. I do keepy-ups in my garden with a ball everyday. I kid myself I'm doing it for fun and I do enjoy it but really I am testing.
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Re: Help!! BFS or something more sinister?

Postby Nathan75 on April 30th, 2014, 6:43 am

Very interesting ShawnW that you should mention fibromyalgia. My sister suffers with that.

My doctor has mentioned this as a possibility to me in the past. I have done some research on fibromyalgia, and yes, as you say, some of the symptoms of that are very similar to those of BFS.

Nathan
Last edited by Nathan75 on April 30th, 2014, 7:01 am, edited 1 time in total.
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Re: Help!! BFS or something more sinister?

Postby leroyb on April 30th, 2014, 6:44 am

I was also fully convinced my left thigh had atrophy. I couldn't find anyone who could agree with me however and I could see in their eyes they were very worried....for my mental health.
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Re: Help!! BFS or something more sinister?

Postby Nathan75 on April 30th, 2014, 6:58 am

leroyb wrote:I was also fully convinced my left thigh had atrophy. I couldn't find anyone who could agree with me however and I could see in their eyes they were very worried....for my mental health.


Oh, believe me, i have had all those thoughts too leroyb. I am almost convinced the muscle in my right leg, just above the knee to the left (vastus medialis muscle) has atrophy. I am sure when i flex it the muscle looks smaller than it did a few weeks ago, and it definitely looks smaller than the one on my left leg.

I am just glad that my EMG is only just over 2 weeks away now. I am counting down the days,hours,minutes,seconds.

Nathan.
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Re: Help!! BFS or something more sinister?

Postby leroyb on April 30th, 2014, 7:28 am

Tough to get one where I am from. Unless a part of me visibly and obviously doesn't work I'd be waiting a minimum of 6 weeks.
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