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jjgevf

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Apr 3, 2011
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Learn about ALS
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LA
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Ball
Well, the last time I was here I told everyone I would be going to see my doctor about my swallowing problems, muscle twitching and cramping. I finally got in to see my family doctor, which has put me through all kinds of test and auto immune test for Lupus and anything else she could think off. Ive had tons of blood work as well, all came back good. Except I'm anemic. She's very concerned about my symptoms and said I needed to see a neuro, ask if I had one I wanted to see, or wanted her to choose. I told her about Dr. DeAlvare in Lafayette. Someone on here told me about him. He's the ALS dr. at the ALS chapter in Lagayette. I wanted to see someone that specializes in ALS from the get go and either set my mind at ease once and for all or find out my worst fear is true! I go to see him in 3 weeks and I know it's going to be the longest 3 weeks! I talked to Sherry the medical coordinator today from the ALS clinic, she's the one that makes the appointments. I had to go over all my symptoms with me, I ask if my symptoms sounded like ALS and she said yes, kept talking about after it was confirmed, which now has me terrified to say the least! I ask her a lot of questions, she would say that sounded like their patients and then no some of it don't? I know she can't diagnosis me, I just guess I wanted to hear, it don't sound anything like ALS to me. She said everyone I'd different and progresses different. I ask about the twitches before weakness, which if I have any weakness anywhere, it's slight and not something I've noticed. She said you can have the widespread twitching without noticing and weakness. She told me about a womans that's had it for 12 years, hers was a slow progression. Sorry to be rambling, I'm just so nervous about all of this. It's causing a great deal of anexity. Can't believe I've waited a year from my first symptom to get to this place! I also have a swallowing test next Wednesday. Hope that sheds some light on this. For everyone that's had one, what would point to or away from ALS. Thanks for letting me vent, hoping in 3weeks I get good news and can put to bed the fear of ALS once and for all!
 
Are there more symptoms than what you have listed here?
 
First off, a scheduling coordinator is nothing more than a secretary. I don't mean to belittle anyones job, so please don't shoot me. She has no right to tell you what it does or does not sound like. She has not been to 10 years of extra schooling and done
the internships, rotations et cetera. She should be fired immediately. I wonder how many other poor souls she has scared the bejeebies out of. Now my rant is over!

I don't have the strength to look through your old posts but I'm with "Redneck" (sorry I forgot your name). What are your symp toms? You could possibly list them, it would help.
 
Sherry needs to be fired. Her statements are completely inappropriate for a telephone conference with a patient that has not been examined in their clinic.
 
I had the strength to read the old post. Fair warning.: Put your blindfolds on NOW I am getting ready to shoot the lot of you.
 
Quite frankly, in my experiences with lots of clinic coordinators, I have NEVER heard of one even venturing to comment on symptoms I am having. Are you sure that conversation occurred? Sounds fishy to me.
 
I just reread through your post. There are 2 things that stick out. Widespread twi tching and no noticeable weakness. I will also throw in a third. Your swallowing issues. If your thinking Bul bar, after a year of swallowing problems, you should be looking quite anorexic by now. As for widespread twi tching try looking up B F S. And again after 1 year, you would notice weakness. But of course this is my opinion, 1 that you will probably toss in the trash.

Good luck to you,
 
Aw, Guys. I hate talking and typing slow.

Kiwi, no need for blinders for me, I'm in rare form!
 
I will take Sherry's side of the story. I think jigeyf has not read the health anxiety sticky, and heaven knows when any of us are obsessed with our health we sometimes do not hear what is being said--only what we want to hear.
Laurel
 
I hope you will share at your appointment with Dr. DeAlvare, about how Sherry was able to practically diagnose you over the phone with her excellent scheduling skills. That is highly unprofessional.
 
Look, I know what was said during our conversation today. I was very scared and concerned since she kept saying he would confirm my diagnose! My husband said that's her business and not to take it to heart. She did say the Dr. is very straight forward and to the point, but with a good bedside manner. She ask me about all my symptoms and I ask her about if I'd see profound weakness a year after the swallowing problem started, she said every patient is different as well as their progression. I was wanting her to say, I don't think your symptoms sound like ALS from the patients we treat or something! She didn't set my mind at ease, even talked about how after u get the diagnose you come back every three months to be seen in the clinic by several different people. As far as sysptomns go. I started with swallowing diffuctilitis first and then the muscle twitches began, then they started in different parts. After that the muscle cramping, in the left palm and in the foot, the side of it and into my toes. I have some perceived weakness, but it could be only that, perceived. My family doctor said the Nero dr could tell me if I have clinical weakness. I got off this board awhile back and tried to put this to rest, but the sysptomns are driving me crazy! I just want to get down to the bottom of this. Oh and I did ask Sherry about MG, she said she hadn't heard of that,I hope it's just BFS and the swallowing is unrelated to the other things going on. She also told me of a woman that works there, her daughter has had ALS for 12 years, I think she was trying to get her point across about everyone is different!
 
If that is what you were truely told, then that is unfortunate. Anxious ears do however, struggle with interpretation, as Laurel suggests.
 
Never heard of MG? At a neuromuscular clinic?

You really should see a mental health specialist about these imaginary conversations and psychosomatic symptoms.
 
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