How are You ?

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How are You ?

Postby Bibi on April 6th, 2015, 2:02 pm

I have followed twitchydoc , little Lost and physerve because i have similar issues about Voice after eating or drinking . I looked at my soft palate While saying ahh and it only raise in The beginning , and that worries me . I dont Think my speech Sound nasal , but i Can ( by a mirror ) se that some air escapes While saing ahh. I am so nerveus about this and wonder how You are doing. I am going to The neuro next monday..
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Re: How are You ?

Postby leaflea on April 7th, 2015, 12:05 am

Good luck at the neuro Bibi! Please update us. I don't know exactly what you are talking about/describe, but I sometimes can't get air out after I've aspirated liquid which happens too often. But I'm CLEAR and betting you are also. So many of us have issues with this (bulbar) area but as we know, that one would move so rapidly, there is no question.
Matthew 6:27 Who of you by worrying can add a single hour to his life?
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Re: How are You ?

Postby Bibi on April 7th, 2015, 4:20 pm

Thank You Leflea , glad you are still around here ! I have Read your posts from your Mayo visit , i wish that there Was a similar place here .
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Re: How are You ?

Postby Bibi on April 13th, 2015, 11:36 am

Today i saw The neuro Who has followed me since august 2014. I told him that i am afraid of bulbar Als , because of an unpleasent feeling in tounge and that i am afraid that i have a weak soft palate . I he looked at my soft palate While i said ahhhh and told i me it Was normal and he also looked at my tounge and Said it Was normal. I told him that i have to clear my Voice after eating or drinking but he Said that it Was ok as long as i didnt chok on food or Water . He told me that he dont Think that i have Als , but if i want too , he Will talk to a Als specialist in The same hospital and refer me to her.
I am relieved that he saw my soft palate and tounge and Said it is normal and that i not have a nasal Voice , that Was my greatest fear at The moment, as i have tried to examine myselves and Found it not normal :roll: , but i have still fascikulations and a lot of sleep jerks , The Strange feeling in tounge , so i Agreed to have a second opinion at The Als specialist.
In The last weeks i have been terrified about bulbar , almost convinced that i have it , but today i feel relieved for now an Will enjoy that feeling as long as possible. And then i Will go to The specialist Who Will look at me with " new eyes " and Will dó a thorough examination.
Dont examine yourselves !!!
Bibi
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Re: How are You ?

Postby leaflea on April 14th, 2015, 9:40 am

Bibi, I actually DO choke on food an water! But I had extensive swallow tests and all is normal. It happens only every few weeks. If you had Bulbar, you would not be able to talk at all. You would have lost very much weight though you might still be able to type and walk a little. There would be such clear progression in one year. Hopefully you get to this specialist who gives you all the reassurance you will need. Hugs from the USA.
Matthew 6:27 Who of you by worrying can add a single hour to his life?
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Re: How are You ?

Postby Bibi on April 14th, 2015, 10:30 am

Thank You Leflea !
I had a good Day yesterday after neuro visit , lunch with my daughter and buying some new chlothes . Late in The evening we had some Cake and While eating this i Got a tickling feeling in nose as some of The Cake Was coming up in my nose. Ughh , that is what worries me so Much , i very often feel Wet in The nose after eating and drinking and one Day i Was bleeding from my tooth and When i Blow my nose The blood came output there .. In The morning i had a huge jaw jerk While i Waked up. So it Was a very short relieve :(
Bibi
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Re: How are You ?

Postby leaflea on April 14th, 2015, 10:39 am

Oh, I know! This disorder is so one or two steps forward, one step back, two steps back ward, one step forward. Inch by inch (or cm by cm) you will improve. Just keep swimming. Keep busy and hit the TIGER store for me if you have one near you :)
Matthew 6:27 Who of you by worrying can add a single hour to his life?
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Re: How are You ?

Postby Bibi on April 14th, 2015, 10:52 am

We have Tiger in my town Roskilde , 30 km from Copenhagen . Have You been there ?
Bibi
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Re: How are You ?

Postby leaflea on April 15th, 2015, 7:02 pm

Haha, no. I have been to the one on the main shopping street in Copenhagen while sleep deprived about 40 hours and occupied myself in there until I could check into my hotel. I loved it! It is the Scandinavian answer to the Dollar Store here in the USA but much more interesting and better.
Matthew 6:27 Who of you by worrying can add a single hour to his life?
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Re: How are You ?

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