A new member with possible BFS

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: A new member with possible BFS

Postby Yuliasir on August 4th, 2015, 10:24 am

OK good result is that in 1,5 year you are still physically fit, despite on trembling, twitching etc. As we all can see, ALS does not wait 1.5 years to make its destructive job. I had seen some documentary recently on the sports tv and I was again stunned by the fact how fast ALS turns strong man into a wheelchair patient (practically in a year or so).
So good news are you do not fit clinical picture.

If mindfulness training does not help you to be free of fears, it just means you may try any other method.

GAD and obsesive diseases are with us once and forever. it is like diabetes. So not only you should expect 'not having fears any more' (this is unrealistic) but also be alert and every time you find yourself in fears again, consider what was changed. it is like diabetic who makes his daily blood test and finds high sugar - he or she must ask herself or himself - what had happened? too much of apples? too much of pasta? a piece of bread? no workout today? missed insulin shot or urea pill? expired drugs in my pen? a flu? - and take proper measures.

We are absolutely the same, just the answers are partly different. Bad sleep. Infection. Too much of beer few days ago. New assignment on the job. A task we have to do but are reluctant to perform. Etc. etc. Everything which causes tension or inconvenience may result in twitches and in fear of twtches.
Look. Search. Think. Do not forget it is a chronic condition. take fear as a symptom, not as a fear itself.

Wish you a good resolution of course
hugs
Yulia
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Re: A new member with possible BFS

Postby Dual_CoRed on August 4th, 2015, 11:14 am

I've been twitching for 1.5 years too and I understand how the fear can get a hold of you. Yuliasir I just want to say you really are an angel on these forums, always answering people going through a tough time. I try not to visit to often but every time I do your giving out great advice. Thx a lot for what you do.
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Re: A new member with possible BFS

Postby Yuliasir on August 4th, 2015, 11:37 am

people here also help me a lot - even the most feared (and probably it is not weird). I see how people survive their symptomes and it helps me to survive my own.

Thanks for good words, Dual_Cored, so we all are helping each other here I believe.
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Re: A new member with possible BFS

Postby alex75 on August 5th, 2015, 6:08 am

Hi Yulia,

Thanks for your kind response, you are absolutely right. My condition is slighty worse than 1,5 years ago, so i don't fit the clinical picture of ALS. The one thing that bothers me is that you read a lot about how hard it is to diagnose ALS and that it kan take up to 2 à 3 years, i don't know that this is actually truth?

When i read your message it calmed me down a little bit and started to realise that i have much pressure on my shoulders mentally and the past few weeks also physically (remove a tree of your back garden isn't easy).

I read the next message of Dual_CoRed, and started to get wet eyes... You`re indeed a little angel...
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Re: A new member with possible BFS

Postby Yuliasir on August 5th, 2015, 9:02 am

not so little my friend, not so little as I wish :) well over 80 kilos :)))

well usually 2 to 3 years are in case when there is not clear clinical picture I think. I mean, there should be something bad with the person in order to keep in in the doctors floow-up, something initially sinister enough. But our fellows, all three who got this awful diagnosis, were not only diagnosed within one year after starting complaining for something wrong, but essentially got either evident losses or enough fine symptomes to become clear ALS patients despite they were not pralysed yet.

It is always suspicious when doctros say someting like well, maybe yes or maybe not, you have half of the picture let's see if you add something in next 6 month... but if you have consistently normal neuro exam and no EMG troubles, then there is no reason to think you may be that long term undiagnosed victim.

surely tree removal could give you a hell of pain for few weeks.

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Re: A new member with possible BFS

Postby alex75 on August 5th, 2015, 9:59 am

Hello Yulia,

Despite youre physical weight, you'lle still be a little angel :D

I've been reading more on this forum and the topic "The "FALSE" association between ALS and "twitching" gave me also the confirmation for my miss interpretation about twitching. The only sad thing to worrie about is that my EMG of january 2014 wasn't entire good, it showes that my nerve conduction is slower than usual. They couldn't explain this and called it maybe Poly-Neuropathy because they where not sure about the reason for this. So that is why I still having doubts about my condition. The neurologist was sure it wasn't ALS so i think it's time to believe him in stead of doubt him...
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Re: A new member with possible BFS

Postby Yuliasir on August 5th, 2015, 11:37 am

Slow condiction more than 1.5 years ago without any progressing to physical loss rather means you may had some static, non-changing condition like for example nerve inflammation at the moment of EMG or so. It is not typical for ALS too, so really you should trust your neurologist.

Have a good day :)
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Re: A new member with possible BFS

Postby alex75 on August 13th, 2015, 10:38 am

Hi,

It is now obviously, the twiching near my left ellebow is now stereo :) on the exact place on the right ellebow it also starting to twich. The reason is hard labour i think, first i removed a tree from our backgarden and the last week i started to dig the remaining soil away with as result more twitching. Mostly it is in my arms but occasionally it comes in my legs. I went also to my MD and he confirmed my twiching and insured me that it is nothing bads...
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Re: A new member with possible BFS

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