Bad days

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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Re: Bad days

Postby TwitchyDoc on April 10th, 2014, 8:13 am

I agree with getting it checked, it resembles neuromyotonia by its nature but EMG could tell more. Has anything changed in your life that you could attribute this worsening to? Diet, medication, location, work environment (chemicals..)?
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Re: Bad days

Postby Little Lost on April 10th, 2014, 5:43 pm

I have been reading your posts for a long time. I wish I could say something to help you, I think you are in UK. I am way up North. Do you have a good neuromuscular specialist to go to ? Not sure if you are NHS or private. I did both . Private first consultation costs around £200 for the full hour and £100 for follow up. EMG extensive is around £550. MRI can be expensive etc. Good thing about private is you can be seen within a few days and it is the best of consultants of your choice that you see. Also you get full hour so even if you don't opt for tests you get all the info on what may be wrong, what should happen to your case, what tests you should get done, and also advice about who to see on NHS.
I am sure you know all this but I wanted to say something, anything. .My thoughts to you and family and hope you get to the bottom of this.

I find lack of sleep is like being caught in a snowball, it starts off small, each night it gets bigger and bigger and the twitching gets worse and worse.

Please take care. You have lived through this for six odd years...don't let it beat you. There will be an answer, but that answer doesn't,t need to be a doomsday one. Kids with the highest temperatures arent always the sickest. Let's hope you are going through a hyper responsive episode of a benign condition such as cramp fasciculation syndrome.
Hx
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Re: Bad days

Postby edado69 on April 11th, 2014, 4:54 am

The latest reply to my post remineded me that there are several readers and that my posts may affect their feelings.
I had fasciculations now for 7 years and I can promise yoy that also my wife has them on and off. The long timers may be well aware of my most distant posts. She is fit and well.
Also, besides apologizing for having been laking of self-awareness, I would like to inform you that I am still as strong as I was 7 years ago. This meaning, I am strong (more than most of my peers are due to regular training). In many occasions it was commented that I should reduce my training, which I have already reduced in great extent and changed.
Also, in my early days I had MRI, then EMG (3-4 months on - 1 fasciculation on my right triceps, my first "hot spot"!), another EMG (15 months on circa - normal) and seend again by a very qualified Neuro 4 years on who also looked at Voltage Gate Auto-Ab (negative). However, it is clear in my specific case, that a progression has been taking place (from day 1), in terms of symptoms (twitching and cramps). This does not mean at all (see my wife), that others will experience the same. And, please, recall that I am still a more than average fit guy.
No, nothing has channged around me.
I work very long hours, and this has been always the case.
There is something ongoing, but I knew it already before.
Perhaps, this may be clarified. Perhaps not...
Fasciculating from the 25/03/2007 (as accurately as I can recall!...)
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Re: Bad days

Postby raindog on April 16th, 2014, 5:31 pm

edado69 wrote:FROM BAD TO WORSE

Yesterday evening, back from work, I had a relaxing hot bath.
I was watching TV with the kids when my arms started cramping. Whet I mean cramping, I really do mean cramps to the point I could not stretch them. First the right, then the left.
I got really scared. Once of those things totally out of the ordinary.
I had to show my wife. I didn't want to, but I was shocked.
She knows, as she can see, how the twitching is going.
She was in tears. I was shocked.
Another night with no "break".
I have to go an be seen again. Things have changed. There is no question about this.
We have to know what we are up against so that we are prepared.
I believe that my "BFS" days are finished.


REMEMBER THIS:

WITHOUT REAL WEAKNESS AND ATROPHY ITS NOTHING TO BE CONCERNED IN RESPECT TO MND / ALS.


Seriously you are doing finger press ups and you're freaking out ? Look Ed, you have been here before and you will be here again simply because that's the condition you, I and plenty of others have to live. Stay strong and instead of strengthening your body strengthen your mind.


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Re: Bad days

Postby nrwtwitcher on April 23rd, 2014, 12:49 am

I have the worst days ever... twitching in my feet is horrible... sleeping, walking etc. impossible. Sorry,..my little finger feels weak... I have visited the neuro two weeks ago.
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Re: Bad days

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