Back from neuro

Post your questions about BFS here

Moderators: JohnV, Arron, garym

Back from neuro

Postby Bart1 on June 4th, 2008, 4:29 pm

Hi everybody,

Got back from the neurologist. First things first. His words, and the most important ones: this is NO ALS.

(I’m going to try to give as much information as he told me but I’m Dutch so hopefully my english is good enough)

The neurologist has been a professor in motor neuron diseases for more than 40 years, so he must know what he’s talking about. He looks a little like Santa Claus, so he must be very good and smart. :lol:
Usually an assistant neurologist does the clinical but this time I saw the professor right away. He didn’t see the use of doing another clinical because I had already been dx with BFS.

I gave him a list with all my symptoms (fascics under feet, fascics 24/7 calves and thights, knees, shoulders, hands, back, cheecks. Tickling feelings on hands, shoulders, cheecks, strange feeling in cheeck, crampy hands, vibrating tongue, cramps in cheecks, cramps in legs, arms, vibrations all over, tremor and so on…) He read them and said: “If I read them one by one I don’t find anything that worries me, if I put them all togheter it brings me to BFS and anxiety.”

I explained my fear for bulbar als so he did a clinical in my mouth, tongue and neck. All fine he said. Of course I asked him about tongue fasciculations. He said that’s not the kind he’s looking for. With ALS they look at something else in the tongue, he explained me what they look for. (not going to explain that because otherwise you all end up in front of the mirror and you don’t have als so no reason to explain it). He said the tongue is the most active muscle and the one that’s almost impossible to keep still. So regarding to shaking tongues: no worry = natural.

I also showed him my arm because I thougt there was atrophy. He laughed. “This is no atrophy at all”

So now everything I asked, he replied and said:

1)Where, when and how the fasciculations appear: “doesn’t matter, not important”

2)What about little ones, fine ones. I heard they are more due to ALS: “Huhm, you know more than me, no, that’s nonsense.”

3) Widespread twitches and bulbar dx: “Here you need to use your common sense, if you are twitching all over and it’s due to ALS than a) you would have had clinical issues b) you are at a stage when it would be very clear there is something wrong c) EMG already pointed out d) you wouldn’t be able to speak normally anymore”

4) Does bulbar ALS appear with weird shakes, something in throat, biting on tongue? “Not at all, it’s diffuculties swallowing and speaking. Not saying words wrong but not being able to, as if you were drunk (very early stage) Also bulbar is the quickest one and you will know this immediately. It doesn’t hide, at your stage (7 months) you wouldn’t be able to say anything anymore”

5) I read 6% of ALS come with fascics first, is there a time limit to be sure? “In my 40 years of expierence I have never seen a ALS patients with only fascics as an only symptom” It’s true some people come here with fascics and that’s the only thing they complain about but when we do a clinical we notice that there are other things wrong with them”
6) Do you see clinical abnormalities in every clinical in every stage of ALS? “Yes”

7) Does clean EMG really rule out ALS? “ We don’t need a EMG to RULE out ALS, we need it to CONFIRM ALS. If there is something wrong we definitely see it in the clinical.

8 ) How come in some EMG’s they see fascics and in some not? (this is a technical explanation of the prof and very diffucult for me to say in English but I’l try) “ The EMG is like a kind of eye, and also as big as an eye. So if they put it in one muscle in only sees that part of the muscle (as big as an eye) If you are not twitching there at that moment they won’t see it although you are twitching in different areas. If you happen to twitch there at that moment they see it. With ALS it’s different. The muscle doens’t get impulses of the nerve anymore or badly and shouts outs to the other muscles to reinforce. So they give a little of their strength to it, result: continous twitching, fibs, sharp waves,…

9) I heard a lot about the CK level, why haven’t they tested that with me? “Not necessary, that we do for muscle diseases, ALS is actually a nerve disease. We only do this if we suspect a muscle disease. And we do not suspect anything with you.

10) What about the my high reflexes? “ You can have high or brisk reflexes if you are nerveous, certain body type. We look for abnormalities in the reflexes.”

11) I read stories on the internet ( we all know certain stories, not going to tell them here again) “ Well, listen, that’s the internet
* It’s not a controlable source/place
* You don’t know if it’s true or not
* Facts are never given cleary
* I it’s in fact an als patient, it’s mostly a cry for help
* Some say I've been twitching for 10 months and now I get ALS, there would be signs if this person had had a clinical


12) Do you ever have patients going from BFS to ALS? “In 40 years – never “

13) Is ALS really that rare? 1/100 0000 What about young people? Well there are indeed cases of young people, but rare. The only connection we might see with young als patients is that they, in many cases, are very intensive sportspeople. We think that they would get ALS eventually but that they have accelerated it. But I mean real sportspeople not going to the gym or have a run, sport is good for you”

14) Do you see a lot of people with BFS? “Every week, listen, go on the street and ask 100 people if they have twitches, I wouldn’t like to feed them. Most people don’t even know they have them, some just feel something but think, okay that’s part of my body. Most people we see here with BFS are medical people who link this to ALS and of course the ‘googlers’(that's us :P ).


Other things he said-
-At some point you just have to believe this is not ALS, we are specialists trained for recognizing this disease, we don’t not easily miss something. As a matter of fact we have 600 ALS patients followed up here.

-If all that has been said over the internet would be true, I would not have a job!

-I can give you a book about neurology, if you read it, I’m certain that you will be here next week again thinking you got 1000 diseases.

-Twitching is mostly always benign.

-I’m concerned about this. I know you can become 100 years with this BFS but I’m afraid for the mental part. You have and try the quit your anxiety, the brain is so powerful.

His advices

- Stop searching the internet, you will always find the things you don’t want to know or aren't true

- Stop exhausting your body: stop running every stair, pick up everything, lift weights all the time. If you just go to the gym to work on your body and health it’s ok, but if this als fear is in the back of your mind during excersise you will exhaust your body even more and twitching will increase. Because you are doing things that you are not used too + your mind is being involved. Result: more twitching, more pain, more cramping,… If you would have ALS you would notice it in the little things like turning keys, grabbing things, getting up from a chair.

- If you worry about the twitches go to your GP get a note for the neurologist . Let them do a clinical. If you are ok trust him/her. Still not convinced, get a second opinion, but after that: stop! Life and enjoy.

- We cannot say never ever, so as I can’t say that you won’t mutate in an alien in 5 minutes either.

- With 99.9% we don’t mean that there is actually 0,1% that will get something, no this is wrongfully understood. Like I mentioned before, we have no garuantees in life, for nothing, that’s way 99,9%. We can’t give you a 100% that you won’t drop dead in 10 minutes. That’s all.

- Trust your neurologist, he’s the one that studied for this, he’s the one following ALS patients, we are not, you don’t know what we look for. Don't dx yourself.

- For dx ALS we don’t look for twitches but for weakness and atrophy, real weakness that doesn’t stop but only get worse.

- I know, he said, this twitching and all the things are bothering you but the only way to reduce them is REALLY accept it that there is nothing wrong with you, as long as you have the slightest doubt about it your mind will maintain this symptoms are even make them bigger.

Maybe there was more information but most things have been said here hundres of times. I’m now going to try and beat this fear and leave it behind me. I’m going to try not to visit the forum as often, but everyone can always PM me.

There is just one last thing to say: I want to thank everybody that supported me, people that PM 'ed me, that prayed for me, that listened too me. Thank you Deedee, Sandra, Sean, Mark, Denise, CDC, DD, Slavin Balen, Swedish Girl, Edado, Cindy, Wamjr1002 and many more. You are good people, love you all and God bless you.
Fasciculating from 20/10/07
Bart1
Hero
Hero
 
Posts: 418
Joined: March 24th, 2008, 3:27 am

Re: Back from neuro

Postby edado69 on June 4th, 2008, 5:04 pm

Best post ever. And we are all happy for you!
Fasciculating from the 25/03/2007 (as accurately as I can recall!...)
User avatar
edado69
Saint
Saint
 
Posts: 715
Joined: August 28th, 2007, 4:05 am
Location: UK

Re: Back from neuro

Postby MarkC on June 4th, 2008, 5:05 pm

Bart,

Great informative post! Congratulations! Now get away from the computer and go enjoy yourself!

Mark
MarkC
Selfless giver of time
Selfless giver of time
 
Posts: 236
Joined: October 11th, 2007, 1:44 pm
Location: Montgomery, AL

Re: Back from neuro

Postby TattooedMommy on June 4th, 2008, 5:08 pm

Bart, I came back today checking for your post. I was getting anxious looking at your belgium time and it was getting late!! However I thought for sure you'd be out celebrating etc lol. I am sitting here with tears streaming down my face NOT BECAUSE IM SCARED OR SAD but because 1.) You got the answers you want and needed and deserved to hear sooo badly. 2) yes I am horomonal! 3.) YOU EVEN ASKED ABOUT TONGUE BITING!!!!! Anyhow...I am sooo thankful and happy that you got the answers you needed and I hope you can now put this behind you. Yesterday and today I have stayed off this site except for checking pm's and ofcourse your much needed thread ! I have NO DOUBT in my mind what we all have here at this point is benign . I know that people say stick around this site is reinforcement etc. Well at times it is..(such as your post) but my psychiatrist has told me NUMEROUS TIMES you CANNOT HELP OTHERS UNTIL YOU HELP YOURSELF! Soooo yes, you'd be a good candidate to help others with the fear you have and now the answers you have..BUT give it time. Give it a break..Its hard too I know! Start with just checking PM's..no longer reading threads etc. Thats how I have been starting and promised my psych yesterday. He told me Im only debilitating myself @ this point. It couldn't be any clearer that I am fine.
Bless you BART- I think and I am going to suggest your visit be a STICKY up there w/ ARRONS NUTSHELL and KITS DENT posts! IT is VERY HELPFUL!..Now Run along..Go enjoy LIVING!!! Don't look back (easier said than done) and DONT LET POISON GET IN YOUR HEAD (meaning dont open these pm's from "certain people" you know contains nothing good. Dont open the threads that you KNOW will more than likely contain nothing good.

Bart I've been praying for everyone on this site- and God is gracious. We should all take a step back and REALIZE or FIND what it is he is trying to show us w/ this benign NUISANCE of a disease! I've been a hospice nurse for awhile now and I never have been so moved by anything than this BFS! Surely there is something to learn out of it!


God Bless Bart and to Others. The ANSWERS couldn't BE ANY CLEARER!!!

P.S. Thanks for asking about tongue biting!!!!!!! :P (the funny thing is- I called to schedule my lumineers and implant (for a tooth i lost on my bottom right side of my mouth. I asked the dentist what would happen if I never replaced it...he said "you'll prob have a ulcer on your tongue from biting it so much :shock: it misaligns your whole mouth and your tongue has no resistance to that spot so your top teeth chomp down on it).... :lol: Ok...so ONLY if I had KNOWN THAT like 5 days ago. (just shows you how HYPER SENSITIVE to THINGS ON OUR BODY WITH THIS BFS STUFF that is prob unrelated to even BFs itself!)
"I've been spending way too long checking my tongue in the mirror
And bending over backwards just to try to see it clearer
But my breath fogged up the glass
And so I drew a new face and laughed".
User avatar
TattooedMommy
Saint
Saint
 
Posts: 813
Joined: January 21st, 2008, 8:04 pm
Location: alabama

Re: Back from neuro

Postby cdc on June 4th, 2008, 7:42 pm

Bart,

Excellent post and excellent English too. You can never go wrong with a doc that looks like Santa Claus. Your Neuro sounds just like mine! Bart, enjoy your day, week, weekend and life! Hopefully todays visit can help you get to where we all want to be.

Congrats again,

CDC
cdc
Selfless giver of time
Selfless giver of time
 
Posts: 238
Joined: February 12th, 2008, 10:02 pm
Location: Florida

Re: Back from neuro

Postby stillanxious on June 4th, 2008, 7:55 pm

great post, thanks for taking the time to write it. I hope you are celebrating!!
stillanxious
Senior Member
Senior Member
 
Posts: 77
Joined: February 23rd, 2007, 8:03 pm

Re: Back from neuro

Postby sharon slack on June 4th, 2008, 8:25 pm

grrrrrrrrreat news. great post. :D

sharon
sharon slack
Saint
Saint
 
Posts: 855
Joined: September 22nd, 2006, 6:07 am

Re: Back from neuro

Postby slowskid on June 4th, 2008, 9:00 pm

Hey Bart,

That's the best news! I'm so happy for you.... you have your WHOLE life ahead of you. I knew it, your friends on this forum knew it and now you know it too.

All the best,

Sandra
slowskid
Selfless giver of time
Selfless giver of time
 
Posts: 143
Joined: March 14th, 2008, 9:07 pm
Location: vancouver

Re: Back from neuro

Postby Richard on June 4th, 2008, 9:05 pm

- We cannot say never ever, so as I can’t say that you won’t mutate in an alien in 5 minutes either.

Very, very funny!

Although I do look kind of weird in the morning before I had a shower...

:lol: :lol: :lol: :lol:

-Richard
If you are a Christian, please say a quick prayer for me. It would mean a lot to me.
Richard
Saint
Saint
 
Posts: 633
Joined: May 14th, 2007, 6:09 am
Location: Chicago, IL

Re: Back from neuro

Postby justcindy on June 4th, 2008, 9:46 pm

Oh Bart, I am so happy for you. Take this good news and celebrate---you are going to be just fine. This post was very reassuring and I am so glad you shared it. Now, turn all that energy around and help someone else. Keep on praying though.
Blessings and gratitude,
Cindy
User avatar
justcindy
Saint
Saint
 
Posts: 534
Joined: January 9th, 2008, 2:11 pm
Location: Kentucky

Re: Back from neuro

Postby c4110djh on June 4th, 2008, 10:21 pm

Great news and it sounds like you have a fantastic doctor! Enjoy your life! Blessings! Denise
User avatar
c4110djh
Hero
Hero
 
Posts: 391
Joined: November 19th, 2007, 9:05 pm
Location: Las Vegas

Re: Back from neuro

Postby DoubleD on June 5th, 2008, 9:43 am

Congrats Bart. I am very happy for you. Like I said I hope you made good plans for the weekend because it is going to be one of your best ever! God bless you and be well my friend.

7) Does clean EMG really rule out ALS? “ We don’t need a EMG to RULE out ALS, we need it to CONFIRM ALS. If there is something wrong we definitely see it in the clinical.


Well said

DD
" By this all men will know that you are my diciples, if you love one another." John 13:35

10 years BFS
24/7 twitches all over
Cramps, tingling, buzzing, and a host of other weird things
Until you own your BFS, you will never disown als
User avatar
DoubleD
Saint
Saint
 
Posts: 624
Joined: October 20th, 2006, 9:25 pm
Location: Oregon

Re: Back from neuro

Postby LIndaJ on June 5th, 2008, 3:22 pm

Hey Bart, great post and great doctor visit. That neuro is a keeper!! Thanks for sharing :-)

Linda
LIndaJ
Hero
Hero
 
Posts: 425
Joined: October 12th, 2007, 4:51 pm
Location: Chicago, Illinois

Re: Back from neuro

Postby AATiday on June 5th, 2008, 4:45 pm

* Some say I've been twitching for 10 months and now I get ALS, there would be signs if this person had had a clinical"


Does this mean that someone was has been twitching for many months and hasnt had a clinical yet could still end up with ALS?? :? I thought that if you had ALS, within months of twitching you would know because there would be other signs that you could note without a clinical? I am confused.....
AATiday
Member
Member
 
Posts: 28
Joined: May 14th, 2008, 8:44 pm

Re: Back from neuro

Postby Bart1 on June 6th, 2008, 12:52 am

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
Fasciculating from 20/10/07
Bart1
Hero
Hero
 
Posts: 418
Joined: March 24th, 2008, 3:27 am

Re: Back from neuro

Sponsor

Sponsor
 

Next

Return to Questions About BFS

Who is online

Users browsing this forum: Bing [Bot], Google Adsense [Bot] and 6 guests