Souris, how was your neuro appointment ?

Post your questions about BFS here

Moderators: JohnV, Arron, garym

Souris, how was your neuro appointment ?

Postby Asterix on November 25th, 2002, 8:49 am

Hi Souris,

just wanted to ask how your neuro
appointment went today.
I hope you've finally got some more answers.
I'm courious how the french neurologists think about BFS as
a "real" disorder (any explanations
other than "stress related" ?)

Did he comment on the bulbar/tongue
stuff (teeth marks, tongue twitches) ?
Did he recommend an EMG ?

Best Regards,
Asterix
Asterix
Member
Member
 
Posts: 47
Joined: October 9th, 2002, 1:32 pm
Location: Europe

Souris

Postby Souris on November 25th, 2002, 1:38 pm

Hi Asterix and everybody else,

I just came here to report about my neuro appointment when I saw your question...
He's probably the best neuro I could've found. He spend 1 hour with me and took me very seriously although he told me from the first minute that I didn't have ALS (I have seen him about my fascics before). We analyzed each symptom and he examined me very carefully. I told him about perceived weakness in my arms and hands, he did strength tests and could find no weakness. He thinks my perceived weakness comes from muscle pain due to tension in my arms (bad position at work, tension in the shoulders, ...). Anyway, as my perceived weakness comes and goes, it doesn't worry me so much. Muscle pain could also come from my chiropractic treatment.
He looked at my tongue for a long time, could see no fasciculations and said that it looks absolutely fine. Tooth marks are normal, he said that everybody has them on the sides of the tongue, especially if you press your tongue against your teeth when you're stressed. He also found my speech perfectly normal and said that it was exactly the same at my last visit. The pain and tingling I experienced in my tongue is absolutely no pattern of ALS. My tongue was probably sore from sticking it out to look at it in the mirror ten times a day. Also, a burning and tingling togue can be a symptom of depression or anxiety, I also read that on some other website.
He looked very carefully for fasciculations on my body and didn't see any, because I do not have them all the time, or I just didn't have them in the places he was looking at. He said that random twitches are more typical of a benign condition, because ALS just would not move around from your thigh to your foot and to your eyelid in a couple of minutes. I also told him that I had "hot spots" that twitched very often for several days and then changed, but it didn't seem to worry him either.
His conclusion was a hyperexcitability of the nervous system which I probably always had, but which becomes more obvious in stressful situations. Pretty much what I thought in my anxiety-free moments.
In the end, I asked him about an EMG and he told me that I really didn't need one. He said that if there was the slightest chance of my symptoms being ALS, he would make me do an EMG, but that in my case, he really felt confident enough not to recommend it, with all his responsibility as a doctor.
What's really nice, is that he also gave me his mobile number and told me to call him if I got worried again. I hope I will not have to call him, but something tells me that I probably will...
So, I think in my case, the whole issue is very anxiety- and stress-related. There is probably an unknown cause to the appearance of the twitches, but I guess my muscle tension and increased twitching were caused by anxiety. As I told you before, I've had other episodes of hypochondria, and it always worked like this. I'll definetly try and stay away from the Internet for medical questions... and I'll also see a psychologist about my anxiety problems.
I'll visit this forum less for some weeks in order to get this ALS issue out of my head. But I'll be back and keep you posted. And if anybody needs help and reassurance, please feel free to send me a private message anytime. Everybody has been so helpful here and now that I'm reassured, I would also like to help others with the same fears.
Take care and try not to worry.
Souris
Souris
Senior Member
Senior Member
 
Posts: 50
Joined: November 6th, 2002, 2:59 pm
Location: Paris, France

Postby Asterix on November 25th, 2002, 3:22 pm

Souris,

thanks for the great news and congratulations for this perfect clean bill
of health :)
The fact that he even didn't recomment an EMG must be really very
reassuring and should put your mind at ease !
And thanks for sharing your neuros detailed comments,
esp. regarding the "bulbar" issuem, which should be also reassuring for many other BFSers here.
Also congrats to your decision to tackle the anxiety related aspect of this
probelm and to try to overcome the obesessive part of this, even if it
means you'll be visting the forum less often...

All the best wishes
Asterix

:)
Asterix
Member
Member
 
Posts: 47
Joined: October 9th, 2002, 1:32 pm
Location: Europe

Postby Debbs on November 25th, 2002, 8:41 pm

Souris hi ya,

Sounds like you found yourself a very caring and sensitive neurologist who is doing his job with excellence. Congrats on a good report, you must feel a tremendous weight lift from you as I did when my neuro found nothing wrong with me either, nor did he feel the need for me to have an EMG. I think you are wise to not look up medical things on the internet and to also take a break from posting and reading in here, time for you to readjust your focus and absorb the good news of good health..

All the best

Deb :D
Debbs
Senior Member
Senior Member
 
Posts: 93
Joined: August 19th, 2002, 12:16 am
Location: Australia

Postby Arron on November 25th, 2002, 9:19 pm

Souris, I am glad you had a great neuro exam, not that I was in the slighest bit of worry over what you described. Like I said before, NOTHING you described sounded even remotely like ALS and to every one else out there that just won't listen to experienced people like myself, let me show you a few quotes from Souris' neuro visit that again, support what I and many other experienced people have been saying all along;

"I told him about perceived weakness in my arms and hands, he did strength tests and could find no weakness. He thinks my perceived weakness comes from muscle pain due to tension in my arms (bad position at work, tension in the shoulders, ...)."
This just goes to show that there is a HUGE difference between perceived weakness and clinical weakness and that it is US that needs to understand that stress and anxiety most certainly DO put unknown strains on our body parts, which in turn, cause more strange symptoms.



"The pain and tingling I experienced in my tongue is absolutely no pattern of ALS. My tongue was probably sore from sticking it out to look at it in the mirror ten times a day. Also, a burning and tingling togue can be a symptom of depression or anxiety."
Haven't we all done this one??



"Tooth marks are normal. He said that everybody has them on the sides of the tongue, especially if you press your tongue against your teeth when you're stressed."
Hello?? There's that "stress" word again... causing more symptoms. Not that stress causes BFS, but it sure can cause other symptoms that increase anxiety levels, which in return, cause even more symptoms that scare the heck out of you.



"He also found my speech perfectly normal and said that it was exactly the same at my last visit."
How many times have we heard that someone has speech problems or have excessive druling? This again shows that there is a HUGE difference between "perceived" symptoms and REAL symptoms. ALS symptoms are REAL and do NOT come and go.



"He said that random twitches are more typical of a benign condition, because ALS just would not move around from your thigh to your foot and to your eyelid in a couple of minutes."
Geeze, how many times have I said this one before??? If I only had a nickle for each time I have said this same, exact thing! Why is it that no one believe's it?


"I also told him that I had "hot spots" that twitched very often for several days and then changed, but it didn't seem to worry him either."
That's because ALS twitches don't "change" after a few days, weeks or months. The only change you'll have with ALS is no longer being able to use whatever part of your body has been twitching for that long! Hot Spots are NORMAL for BFS and we've said that over and over on here. Everyone really needs to soak-in what Souris' doctor said, because he is an EXPERT!

We all need to give Souris a round of applause for sharing with us such a detailed account of what his neuro said, and it just goes to show everyone that maybe stress and anxiety aren't the actual underlying "cause" of BFS, but they sure are MAJOR factors in causing even more symptoms to arise or to irritate and amplify existing symptoms that scare you even more. It's a vicious cycle and you really have to keep your head and understand the FACTS to get out of it. I hope all of you can utilize this shared information to your advantage and see that just because you "think" you have strange symptoms, they are probably just normal for the course and that stress and anxiety can indeed cause strange things to go on with your body, hence why so many doctor's blow stuff like BFS off as stress and/or anxiety related.
Arron
Moderator
Moderator
 
Posts: 753
Joined: August 19th, 2002, 10:25 pm
Location: Sonoma, CA.

Postby Guest on November 25th, 2002, 9:39 pm

greate postings guys. :D :lol:
Guest
 

Thanks

Postby Souris on November 26th, 2002, 4:15 pm

Hi everybody,

Thanks so much for all the praise, but you all have been such a great help over the past weeks, that it's me who has to say thanks.
It makes me very happy if my post can offer some reassurance to others.

I wish you all the best and I hope you'll all feel better soon and enjoy an anxiety-free life again.

Souris
Souris
Senior Member
Senior Member
 
Posts: 50
Joined: November 6th, 2002, 2:59 pm
Location: Paris, France

Thanks

Sponsor

Sponsor
 


Return to Questions About BFS

Who is online

Users browsing this forum: Bing [Bot], Google [Bot] and 5 guests

cron