Appointment Update

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Appointment Update

Postby Barb916 on December 29th, 2004, 10:04 am

Hi all,

Sorry it's been so long but as we all know the site was "under construction for several days".

Wonderful news! The doc I saw at Geisinger was wonderful. He flat out said "you don't have ALS, you don't have MS, you don't have anything that is going to shorten you life span". I can't tell you how wonderful it was to hear those words!

My twitching symptoms started in April so he asked me how I had been feeling in Feb and March. I told him I had a bad chest hold that hung on. I went to my GP in late Feb or early March and she sent me for a chest x-ray. X-ray showed fluid in my lungs. My GP said I might have had pneumonia and not know it. THe neuro thinks the twitching may be a residual effect of my exposure to either a virus or a toxin. He said it can take a long time to clear up.

He was so kind and caring, asking about my work and family, as well as patient. He listened so intently when I was speaking. After I told him my list of symptoms, he would ask "anything else". I laughed and said "if you keep asking is there anything else, I'm probably going to keep thinking of something !" His response was "good, that's why you're here..tell me everything" . This is the way ALL doc should be.

He said my exam was perfectly normal. Though I did tell him I have 2 numb toes we didn't get into the cause (I guess it could all be part of the "residual effect".) I'll ask him about them again when I see him again.

Oh...he said, he does wan't to see me again to do his own EMG. Not sending me to someone and him getting the report. He wants to do it himself. To me that just show me he's through. He said my other EMG does prove no ALS. So that worry is gone ! He said he wants to do it himself because most EMGs done don't do a particular test that he does so he wants to do that specific test. I don't know what he's looking for or why...but he told me those wonderful words that I don't have the bad stuff so I really didn't care that he wants to do another EMG.

He felt my arm muscles for a few minutes and of course, no twitches..they were in my calf. So I told him chk my calf...of course...they stopped and went to my face. In order to not fell like an idot, I didn't say anything.

I told him my tongue twitches so he turned off the lights and looked at the sides of my tongue with a flash light. Also did strength test but tenting my cheek. Normal !

As we spoke during my exam, it turns out he's married to my high school friend's sister! It can hurt to have an "in"...right :D

I am feeling so much better emotionally. My twitching is still going bonkers as usuall but now it doesn't bother me. No more FEAR !!!!!

I don't know when my next appt/EMG will be. His office is going to call me and let me know. I'll keep you guys posted on when it is and how it goes.

Barb
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Postby Barb916 on December 29th, 2004, 10:10 am

Forgot to mention....

He offered me meds to control the twitching. I declined. I told him it was enough to know that they are benign. He told me to drink 2 glases of tonic water a day to help with the twitching. Have you ever tried that stuff? It's horrible! I can't drink it. No way. I'll just deal with the twitching. :)


I posted this in case their are any "Gin and Tonic" lovers out there. Enjoy a few over the holidays...it may stop your twitching :D

Barb
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Postby PDR on December 29th, 2004, 10:45 am

Barb:

Congrats....good news.....

Paul
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Postby amy_twitch on December 29th, 2004, 12:40 pm

What a wonderful doctor! You're right....it'd be nice if they all had such good bedside manner.

Terrific news....and it's interesting to see that he thinks the twitching is a residual effect of a virus or toxin. That is definitely one of the leading theories. Maybe next time you see him, he can further explain his thoughts on why it happens.

Also, even though you declined the meds to help diminish the twitching---you might want to share the names of those meds with the board (if you know what they were). Others here might be interested in them.

I'm thrilled for you---we all knew it'd be good news....but it never sinks in until you hear it, especially from a doctor like that.

Congrats and enjoy ringing in the new year!!

Amy
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Postby Ava on December 29th, 2004, 12:40 pm

Barb,

I am so very happy for you!!

I have to add that both the neuros I went to were great like your new doctor. My doc's also wanted to administer their own emgs so you know they know what they are doing and what they are talking about. Once you see a great caliber doctor such as the one you saw you can really take their words to heart and I am glad that you have.

Take Care and rejoice in all that wonderful news!!

Ava
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Postby johnta on December 31st, 2004, 1:11 pm

Good news, glad all's well. Interesting your doc offered tonic to help calm the twitches - my neuro offered beta blockers but said they would have side effects - make me dozy etc. Like you, I was so pleased that my twitches etc. were benign that I decided there & then I could live with them.
Now an 8 year twitcher & just get on with it - play plenty of sport etc. My neuro also linked condition to a viral attack.
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Postby LeeNC on January 1st, 2005, 2:12 pm

Barb:

Wonderful, wonderful! Please clone this doctor.

I was also pleased to hear that your doctor thinks this virus/toxin reaction (if that's what BFS is) may go away after a while. So you've shared good news about yourself and also a bit of hope for good news for the rest of us.

Yay, Barb!

--LeeNC
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