question for you experienced folks

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question for you experienced folks

Postby dont on May 9th, 2004, 8:16 am

I was wondering how you are to believe your neuro without an EMG. He said he can spot ALS when someone walks in the door and especially on exam. He said by the time someone makes it there for ALS he will find it. I felt good about that on that day but then I find things on the net that state it has a SLOW progression. I have a few days where I felt that I could not use my legs or right arm at all and then they were better the next which I know the weakness does not get better with ALS but how do you know it's not slow progression? No offense but if anyone is going to say you have to wait to see don't post that!!!! I know that sounds like I am in denial but I guess I am. Unless you have something comforting to say to me or beneficial then don't say anything else because I have just now began to calm down and I don't want to freak out again. My neuro said if you are twitching and it's ALS you will have obvious clinical findings of weakness that will never go away and get worse. Also I am curious to know if anyone knows where Arron got the info from on "BFS in a nutshell". I have only gone to medhelp and ALS sights and have never read about BCFS. I have cramping and I have never heard the medhelp neuro say anythinga bout that nor have I read about it on any other website. Keep in mind I haven't done BFS search. I was referred to this site by someone on the medhelp forum. I am trying to stay off as many sites as I can for fear of them scaring me half to death.I guess I just need validation that the info Arron has on there isn't base on experienced only and the info did come from professional sources. Absolutely no offense to him because this site and his posting has helped me tremendously although I know it may not seem that way, I have come a long way! Also how positive is a normal CPK??? Thanks for your responses and support
dont
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Postby jcavan4125 on May 9th, 2004, 10:23 am

Hi
If you need an EMG for reassurance then by all means go back to your neuro and let him/her know that you want one regardless of whether they are sure it's not ALS! Once that is done (provided of course that it is normal) you should be able to feel better about the diagnosis.

Yes, everything that Arron has said in BFS in a nutshell is verifiable in medical texts. Like yourself, I feel if it isn't verifiable, it just anecdotal information. Arron will tell you specifically when something is fact versus his opinion. The diagnosis of BFS as a specific entity did not come about until the early 1970s (as best as I can tell), and it comes in various names. Benign Fascicualtions, BFS, cramp fasciculation syndrome and others.

In regard to your worries about so called slow progression ALS, weakness is still the hallmark of the disease. Only a minority of patients (6.7% in one study) present with complaints of fascicualtions as their only symptom. Remember that fasciculations represent denervation of the muscle, by the time that occurs their will almost always be signs on physical exam. Invariably, there will always be signs on EMG!

Hope this has helped!
Joe... "That which does not kill us makes us stronger"! - Nietzsche
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Postby garym on May 9th, 2004, 10:32 pm

Dont

About you concern of cramping and benign cramp fasciculation syndrome, I've personally been told by two neuros that many people have just that, Benign Cramp-Fasciculation Syndrome. The last neuro to tell me that works at the MDA/ALS Clinic @ Baylor College of Medicine in Houston. His name is Dr. Harati, and he is an ALS expert and is also very familiar with BFS. He told me there are several conditions that cause benign fasciculations, and that many times people have pain and cramping with these conditions. Do a google on this dr, his credentials should reassure you that benign cramp fascic. sydrome is real.

One other thing he told me is that with ALS, symptoms don't come and go, they come and stay (that would be regardless of the speed of progression). I know that has been said on this site many times, but coming straight from the dr. helped me.

Good luck to you, and stay away from negative sites. They will only make your life hell.

Gary
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Postby dont on May 10th, 2004, 7:29 am

Does anyone know about slow progression ALS? I didn't think it existed because once the circuit is broken how could it die slowly? That is what still confuses the heck out of me. I read that there is such as thing and the neuro tells me without a doubt he knows I do not have it with one thorough exam. The preceived weakness has been profound and then it's been totally un-noticed or then it's been kind of notices which my husband keeps saying it's fatique from the panic and worry and tension. I'm so confused and frustrated!
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Postby dwl on May 10th, 2004, 8:26 am

Slowly-progressing als is as rare as hen's teeth. It would be picked up on an emg if you have had one. A normal neuro exam also pretty much excludes it. Don't torture yourself any more and above all, stay off those scary als websites cos you DON'T HAVE IT!!!

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Postby garym on May 10th, 2004, 9:13 am

Dont,

What you are experiencing now has been experienced by most of the people on this website. The initial panic that most people experience fades with time, or atleast it did with me. Don't get me wrong, there have been relapses, but not as bad as the initial panic. Also, your husband is probably right, the stress and anxiety can cause a lot of your symptoms. My wife said the same thing many months ago. I only wish I had had the strength to listen to and believe her. But, there is also a lot of pain/fatigue that just comes with the BFS for me. That part is difficult to deal with and will play with a persons mind. I can't tell how many times I've said to my wife that this crap that I have must be something worse than BFS. The bottom line is that I've seen two highly qualified neuros, I have had three emg's, and all they have all said BFS. The best advice I can give you is to stay away from negative sites, and try to get enough sleep. For me, lack of sleep really makes everything worse.

BTW, this morning I have slight cramping and sharp pain in my left calf muscle. It bothers me, and causes a slight bit of stress, but I just keep reminding myself what the drs. have said, and I have to trust them. I have to much to lose (wife, daugther, and job) to continue to allow this crap to get the better of me. In other words, I've reclaimed my life from this garbage. I hope that some day soon, you can make that decision. It took me too long.....and I really missed out on a lot during that time.

Good luck to you,
Gary
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Postby dont on May 10th, 2004, 9:17 am

Gary,
Thanks for your words of comfort. They made me tear up because my biggest frustration is that I feel like I have not been a good mom to my 2 year old. I haven't been myself since I have been worried about the ALS crap. I too am always saying to myself it has be something worse especially when I ache which is almost everyday. I find that Bengay helps the pain but it stinks! I'm so tired and so tried of worrying about all of this but hopefully I will get there! Thanks. Oh and what does "BTW" mean. Thanks.
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Hi Dont

Postby KimE on May 10th, 2004, 10:28 am

If nothing else maybe this will give you some reassurance.

With the state of the medical community today and malpractice suits being as prevalent as they are your neuro is not going to tell you that he is 100 percent certain you don't have ALS if he has even an inkling of the slightest apprehension.

He would cover his butt and do all tests necessary.

Kim
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Hi Dont

Postby KimE on May 10th, 2004, 10:29 am

If nothing else maybe this will give you some reassurance.

With the state of the medical community today and malpractice suits being as prevalent as they are your neuro is not going to tell you that he is 100 percent certain you don't have ALS if he has even an inkling of the slightest apprehension.

He would cover his butt and do all tests necessary.

Kim
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Hi Dont

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