Pull the plug!

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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Pull the plug!

Postby Bradford on June 12th, 2004, 11:22 pm

To: Theydontbelieveme,

What’s the point here? I just read the thread and the alleged ALS patient went to his doctor with slurred speech and swallowing difficulties. I also read the thread here at our forum I DIDN’T SEE ANYTHING IN THIS THREAD WHERE THE GUY COMPLAINED OF REDUCED SPEECH RATE! I think everyone who reads my reply should note that Theydontieveme may be putting words and meaning into things where they are not applicable, beneficial, or truthful.

You must have a real “jones” about this issue and must know this guy really well to tell us all that he had reduced speech rate because he certainly didn’t say anything about it in the post that you participated in with him. Are we to assume that he has confided in you since he’s been diagnosed with ALS and you have his confidence regarding medical history?

So why don’t you tell us all how you can say that he had reduced speech rate when by his own accounts, only BRIEFLY posted about slurring and swallowing problems. This guy joined brain talk in 2001 and here it is 2004 so there’s got to be something that made you put the two together right?

I remember seeing a post about motor neuron diseases in regards to ALS that bulbar progression is rapid to death compared to lower neuron involvement. In addition, bulbar onset by percentage is much lower than limb onset (more common). According to the numbers, this guy shouldn’t be surviving. Care to take a crack at that, or are you too busy diagnosing your self with ALS as your posts tell you are going to do because you can’t believe all the neurologists you’ve seen.

Oh by the way, this information was gleamed form the Cleveland Clinic Neurological Forum in the archives and an outline to medical students by Dr. AJ Windebank of the Mayo Clinic titled Motor Neuropathies and Motor Neuron Diseases. How about your information where does it come from? Come give us a break and site your references or do us all a favor and pull the plug on your computer and donate it to a school or something because it would be better used there then in your hands!
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Postby tom.u on June 14th, 2004, 2:26 pm

hi all,

this is not really a response to a particular message, just a personal point of view on BFS. I dont claim to have a great deal of medical knowledge and do not take drugs to ease BFS.

If you have been to a neuro and had an EMG and the results show you have BFS then you have BFS. You do not have ALS, motor neurone disease or any other neurological or neuromuscular disease. From what i understand BFS cannot develop into anything worse, it is a disease in its own right. Therefore if you have had BFS for year(s) and have no weakness then you have nothing other than BFS. I hope i'm right so far.

With this in mind, BFS is not painful, debilitating nor does it effect other aspects of health. So, to the people who get overly paranod thinking you have ALS you are putting yourself through unneccessary mental torture! Why?!

I view BFS as something like hayfeaver, acne, asthma, and something which is obviously not as serious as something like diabetees. SO chill out get on with life and spare a thought for those who do have life threatening neureolgical diseases and count yourself fortunate.

Personally, what i am most concerned about is the cause of BFS and the occassional mental annoyance it causes. Though for me it is nothing more than an irritant and is certainly not worth having to live with the side effects of drugs.

ok, i have made my point and if you read it then thank you very much. My message is chill out, its not that bad and spare a thought for people worse off i rather than stressing yourself out!

cheers

tom(England)
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Postby garym on June 14th, 2004, 5:48 pm

Tom,

If you are lucky enough not to have pain and other dificulties with your BFS, then you should be grateful. For many of us, this condition is much more than just twitching.

Take care,

Gary
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Postby John_JR on June 21st, 2004, 8:56 pm

True Gary. The twitches are somewhat tolerable, but the random shooting and stabbing electrical pains are very hard indeed.
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