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Re: Back from neuro

PostPosted: June 6th, 2008, 12:52 am
by Bart1
AATiday,

No you got this one wrong. What my neuro wanted to say is that a story like that on the internet probably isn't true.
If this person would have been to a doctor or neuro at anytime, they would have found something in his clinical.
He said that he never (in 40 years) had seen an ALS patient come in with only twitching. It is not the twitches that they look for but weakness and atrophy. The whole twitching thing is really put out of context. Most people twitch, we just twitch ' a little more' and are focused on it more. When I told this to my friends they all called days later to say that they also twictch and now ofcourse they feel them more...it' just our brain that is focused on them. Remember ALS is a very progressive disease, some people die within months, some in 2 years some life with in for 5 years (but that means 4 years in a wheel chair)
Advice: if you didn't go to a doc or neuro yet: go, get the clinical so you know you are fine. If you already went: you are fine, als doesn't hide

best regards
Bart

Re: Back from neuro

PostPosted: June 6th, 2008, 6:13 am
by backagain
Bart1, this info may be the best and most comprehensive info every put on this board by a "regular" member. What this post brings that others do not, is the words of a doctor with 4 decades of experience with ALS. This doc has affirmed or re affirmed what many other docs have said. I think this post needs to be placed at the top of every board and made apart of "BFS in a nutshell." Clean up the few little grammatical errors and use this info to help everyone who comes here.

Thanks for this...

Just out of curiousity, I would like to know what he said about the tongue in ALS. Once I got over my fear of having ALS, I became even more curious about it's progression. It is a very unique disease. If you do not want to post it, I would love a PM. I found a film at youtube that really shows alot of the progression of ALS and it actually made me feel better, seeing how healthy I am compared to those who are fighting that terrible disease.

Re: Back from neuro

PostPosted: June 6th, 2008, 1:02 pm
by kit
Bart,
This was an excellent post! I am glad that your neuologist took such time and care to explain so much and that you took the tie and care to share this with the forum.

I know it has been quite awhile since I have posted (although I speak to quite a few yet via PM) but I thought that it was worth chiming in on this thread. Let me just say that I am very well. My practice is busy and I am teaching as well, my daughters are wonderful, my dad is doing terrific and my husband is most excellent (he will deploy in February). I have started running and working out and I feel fabulous. Now, I still twitch and ache and vibrate although far less except when I have a flare. That can occur when I am stressed, tired, getting ill and sometimes hormonal but all in all it is a year and a half since I first started with this. I saw my neuro for a follow up and he wishes he was as strong as I am:) Of note is that I still have never had an EMG nor will I at this point.

This condition comes with a lot of anxiety and a lot of very strange and inconsistent symptoms but it is most definitely benign. Part of the "healing" process is to accept that although this may never go away, you are not this condition and you are not ill. Once you can accept this it makes even the flares nothing more than a minor speed bump. So please, read this and other posts that give you comfort and take control back over your life and begin to move on. Life is short but far too sweet to waste worrying about something that will likely never occur.

I am available to anyone with questions or concern ANYTIME via PM, but I wish you all to be well and be happy!
Smooches,
Kit

Re: Back from neuro

PostPosted: June 6th, 2008, 1:02 pm
by kit
Bart,
This was an excellent post! I am glad that your neuologist took such time and care to explain so much and that you took the tie and care to share this with the forum.

I know it has been quite awhile since I have posted (although I speak to quite a few yet via PM) but I thought that it was worth chiming in on this thread. Let me just say that I am very well. My practice is busy and I am teaching as well, my daughters are wonderful, my dad is doing terrific and my husband is most excellent (he will deploy in February). I have started running and working out and I feel fabulous. Now, I still twitch and ache and vibrate although far less except when I have a flare. That can occur when I am stressed, tired, getting ill and sometimes hormonal but all in all it is a year and a half since I first started with this. I saw my neuro for a follow up and he wishes he was as strong as I am:) Of note is that I still have never had an EMG nor will I at this point.

This condition comes with a lot of anxiety and a lot of very strange and inconsistent symptoms but it is most definitely benign. Part of the "healing" process is to accept that although this may never go away, you are not this condition and you are not ill. Once you can accept this it makes even the flares nothing more than a minor speed bump. So please, read this and other posts that give you comfort and take control back over your life and begin to move on. Life is short but far too sweet to waste worrying about something that will likely never occur.

I am available to anyone with questions or concern ANYTIME via PM, but I wish you all to be well and be happy!
Smooches,
Kit

Re: Back from neuro

PostPosted: June 6th, 2008, 4:41 pm
by backagain
Kit is the best poster in the history of the board...We need to clean up the foolishness so people like Kit will come back.

Re: Back from neuro

PostPosted: June 6th, 2008, 9:31 pm
by morzani
thank you Bart
Though the neurologist said you that you were ok, and asure you that you dont have anything nasty, you were able to make so many questions to him, that helps us a lot, and very reasuring. good luck

Re: Back from neuro

PostPosted: June 7th, 2008, 7:03 am
by SwedishGirl
Great english, great post and EXCELLENT news! I knew it!
Hugs and kisses ;-)

Re: Back from neuro

PostPosted: June 12th, 2008, 7:25 am
by bktisbury
Thank you for this information. I have been seen by a gp and 2 neuro's. I had an emg done on the entire left side of my body. I had bloodwork. All fine. My tongue began twitching after that and now I am having some weird tongue or throat thing going on-- i feel like i am pressing my tongue up on the roof of my mouth and getting tongue sleep starts-- very odd-- my doc wants me to go on anti anxiety meds-- i take a xanax on occassion-- I am thankful for your post-- made me feel much better-- can not get the als thought out of my head-- horrid

Re: Back from neuro

PostPosted: June 15th, 2008, 2:50 pm
by bktisbury
thank you for your post

Re: Back from neuro

PostPosted: June 17th, 2008, 12:22 pm
by Rocketman
This is indeed a great post. I don't know how many time I go over this post to again some sense of assurance and reality as well. Thank you Bart for sharing this post with us.

Re: Back from neuro

PostPosted: July 16th, 2008, 3:32 pm
by macmaxam
Bart

Congratulations and thank you for the post. Did this doctor feel that BFS was [b]caused[/b] by anxiety....or is it caused by something else and anxiety makes BFS worst?

macmaxam

Re: Back from neuro

PostPosted: July 17th, 2008, 9:55 am
by macmaxam
Bart

Congrats Bart!
Did your doctor think that BFS was caused by anxiety or that it was caused by something else unknown and anxiety just made the twitching worse??

thanks

Re: Back from neuro

PostPosted: July 17th, 2008, 12:28 pm
by Chick
Exactly the kind of post I needed. Thanks a ton!

Twitching one month, yesterday
Chick

Re: Back from neuro

PostPosted: May 27th, 2009, 11:27 am
by AndyTwitchalot
Bravo man, excellent post. This should be a sticky.

Also, your English is better than many people I know who were born and raised in the states.

Re: Back from neuro

PostPosted: October 3rd, 2009, 7:33 pm
by Danielle915
This is an awesome post!