Londoner with twitching reaching out to others

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Londoner with twitching reaching out to others

Postby Loobaj on September 30th, 2014, 12:16 pm

Hi everyone

I'm based in London and have been going through the mill big time with the old twitching/ALS fear and wanted to reach out to fellow twitchers out there.

I started twitching at the beginning of July, first my right eye, then calves, and it quickly progressed to the rest of my body - in particular, my upper arms, thighs, shoulders, palm, arch of foot and even my lips! all mainly the right hand side. The twitches are sometimes thumping or so slight they can hardly been seen, just a flutter. My right eye has still not stopped twitching, sometimes its twitching so badly it is difficult to focus. Anyhow, I also have on and off pain in my right arm and shoulder, right hip and knee along with pins and needs in my right hand and foot, a tickling sensation down the right side of my face and burning in my right index finger. It basically feels like my body is loosing the plot!

So, to cut a long story short, at the end of July I visited a neurologist who said he didn't think it was anything to worry about as my neuro exam was normal. Symptoms continued so I went for a second opinion and was found to have globally brisk reflexes, the neurologist saw my palm twitching but still he said nothing to worry about as no weakness. Anyhow about a month went by and I was consumed by all of this and I thought I need a conclusive test, so had an MRI, EMG and NCS which all came back normal last week - massive phew!

But, I still have the symptoms and am finding it incredibly hard to trust the results. I am constantly body checking and strength checking and it is breaking me. My rational side knows I need to trust the EMG results and move on and accept the symptoms but I just don't seem to be able to do it. I know this fear will become all consuming. My neurologist says there is no neurological cause of my multiple symptoms, but he did not mention the possibility of bfs.

A few questions:

Do my symptoms sound like bfs to you?

I am particularly worried about the twitches you can hardly see - when I wiggle my fingers I get the slightest flutter of a twitch on the top of my palm. Anyone else get such subtle twitches/movements?

How can I get myself to trust the normal EMG means no ALS?!

Anyone got any tips on moving forward with these symptoms, and being able to let go of the ALS fear?

Any other Londoners out there?,

Thanks for reading!
Loobaj
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Re: Londoner with twitching reaching out to others

Postby Crampydr on September 30th, 2014, 3:58 pm

Hiya,

I have nearly exactly the same symptoms as well as some others...
I am now 6 months down the line and have been starting to make some headway with the anxiety.
I too had brisk reflexes but not much else on examination and no Emg.

I'm definitely in a much more comfy place now and I think some fairly simple things have made a difference.

Gradually I have tried to take focus off my body by stopping ANY self checking / tongue / hand inspection, minimising my time on this site to less than once a week and stopping reassurance seeking. I didn't think it would work and it has not been easy, but gradually as I have stopped these things the intensity of my worries eases.

Along with this I have been trying mindfulness and this too has helped.

Still twitch like a crazy person but I have a spring back in my step.

Hope that helps! Vx
Crampydr
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Re: Londoner with twitching reaching out to others

Postby Loobaj on October 1st, 2014, 1:27 am

Hi there, thanks so much for replying - I am currently having therapy but I can't say it's helping so far - can you recommend any books or websites for mindfulness?

Thanks.
Loobaj
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Re: Londoner with twitching reaching out to others

Postby RGB on October 1st, 2014, 3:17 pm

Welcome from a fellow Brit!

Don't get too hung up on the neuro not mentioning BFS... Harmless fasciculations (which is what you have) are benign but not every doctor chooses to use the BFS term. The outcome is the same i.e. you twitch, you may continue to twitch, you may not, you won't get ALS, you may get ran over by a (red) bus.

I'm an emotionally retarded man :) so won't offer any further advice on how to overcome your fears, however with the investigations you have had, all of which have come back clean, then these fears really are unfounded.

RGB
My history....Jan '13: Widespread Twitches. May 13': Unremarkable Neuro Exam. Jul '13: Clean EMG. Oct '13: BFS Diagnosis Today's Date: Twitching and Healthy!
RGB
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Re: Londoner with twitching reaching out to others

Postby Crampydr on October 8th, 2014, 12:55 pm

Hiya,
Sorry for the delay! I am quite strict with myself with once weekly visits to this site! I find it so helpful to know other people have similar symptoms, but if look everyday I find myself thinking about things more...
The book I have been using is called 'Mindfulness - finding peace in a frantic world '. I can be very sceptical about these things. And if some one told me a year ago I would be meditating I would have laughed!!
However, needs must and it seems to be helping me.
Vx
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Re: Londoner with twitching reaching out to others

Postby Loobaj on October 9th, 2014, 5:40 am

Oh thanks for that, I'll get it! Therapy doesn't seem to be having any impact so might as well give the book a go.
Thanks again
Loobaj
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Re: Londoner with twitching reaching out to others

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