Re: Swallowing

[Guest guest]

I have problems with swallowing at times also. I go through times where I aspirate food very easily, especially dry, powdery, crumbly things. It feels like my epiglottis (the flap that closes the trachea when you swallow) was not working well. I went to Massachusetts General Hospital and had swallowing studies done (fluoroscopy or motion x-rays done while eating and swallowing different foods or liquids) Of course it wasn't bothering me when I had the tests done so I have no definitive diagnosis. They told me that they have a swallowing specialists teach you techniques to minimize the problem but I had no dx so no therapy.

I have taken to being more careful when I eat and have found that when my head is rotated either right or left it is worse. I also am more conscious when I eat not to talk until my food is completely down.

When I do aspirate food or liquid I will cough and cough and cough. I have found that using my Albuterol inhaler helps to reduce inflammatory response at that point.

Do get it checked out!

Vivien

Subject: SwallowingTo: Neurosarcoidosis Date: Wednesday, February 23, 2011, 9:12 AM

My husband told me last night that it was very obvious that I am having trouble swallowing. I have known that for some time, but as that symptom has come and gone over my sarc years (15 now) I wasn't paying it much attention. I am having quite a time swallowing my medication and anything "crumbly", plus things keep going down the wrong pipe for no reason at all. I am going to see Dr. Baughman today, and he insisted I bring it up. He said it usually means something serious is going on.

I was going to mention to him, too, that I was having foot drop in my left foot, but that is the ankle/leg (one on each side) that I broke two months ago, and I don't even know if I would still have the problem. Oh well.

Any hints on the swallowing thing. As you all can tell, I have been having an extra rough time of it lately. I try to buck up and not mention it to anyone around here, but it is getting overwhelming again.

[Guest guest]

My gastroenterologist told me it was esophagus sarc. I didn't know what was going on. I have to use a straw to drink liquids or I choke, or they get stuck and won't go down. It doesn't matter how small a sip I take. Same thing with food, meds, it's like it gets stuck mid swallow, and it won't go down. I can point to the place it gets stuck, about 2 to 3 inches from where my neck starts underneath my head. Not to be gross, but I have had to spit out whatever was in my mouth because it would not go down. (I was raised that you never spit-suffer yes-spit no) Can you tell I had a very good "southern" mama. Anyway, as the sarc has gotten worse, this has to. I have learned to compensate - straws, and when I feel the "stuck" feeling, I

just hold, somethings for a bit, and it will finally work like it should. They even did a swallowing test, but that was not it. It's a sarc thing.

Also, sarc positively loves ankle joints. Look up sarcoidosis and ankle joints. It's like we're the buffet, and it does have favorites. There are different medications to back some of these things down. Don't dispair, if nothing else, we are a tough lot.

Also, since the warmer weather is coming up. Alot of us have issues with sun exposure. Try to be careful until you know where you stand. If I get out in the direct sunlight for 15 minutes I become so weak that I have to lie down. I am a fighter and it aggrevates me to no end, but I have no recourse, I can lie down or collapse. Maybe you'll be one of the ones it is not an issue for. I just didn't want you to run into it and not know what was happening.

Hope your feel better soon, remember Spring's coming soon; that always makes me smile. connie

To: Neurosarcoidosis Sent: Wed, February 23, 2011 9:12:10 AMSubject: Swallowing

My husband told me last night that it was very obvious that I am having trouble swallowing. I have known that for some time, but as that symptom has come and gone over my sarc years (15 now) I wasn't paying it much attention. I am having quite a time swallowing my medication and anything "crumbly", plus things keep going down the wrong pipe for no reason at all. I am going to see Dr. Baughman today, and he insisted I bring it up. He said it usually means something serious is going on.

I was going to mention to him, too, that I was having foot drop in my left foot, but that is the ankle/leg (one on each side) that I broke two months ago, and I don't even know if I would still have the problem. Oh well.

Any hints on the swallowing thing. As you all can tell, I have been having an extra rough time of it lately. I try to buck up and not mention it to anyone around here, but it is getting overwhelming again.

[Guest guest]

I also have trouble swallowing at times. It comes and goes and it is quite painful...like I swallowed something that suddenly expanded. It usually occurs about four-five inches below where i had my medianoscopy. It happens on the first bite, or two, and i have to stop and let the 'episode' pass. I have spit up on occasion....especially fluids. It doesn't happen every time I eat. Days can go by with no flares of this and then i can have it happen several times in one day. I tend to have these episodes when i am going through a particularly rough time. I usually stop and close my eyes and breathe through it until it passes. I would think smaller bites might help and maybe chewing more thoroughly. ...but i don't usually

remember that....lol.Life may not always be the party we hoped for, but while we're here we might as well dance!

Subject: SwallowingTo: Neurosarcoidosis Date: Wednesday, February 23, 2011, 2:12 PM

My husband told me last night that it was very obvious that I am having trouble swallowing. I have known that for some time, but as that symptom has come and gone over my sarc years (15 now) I wasn't paying it much attention. I am having quite a time swallowing my medication and anything "crumbly", plus things keep going down the wrong pipe for no reason at all. I am going to see Dr. Baughman today, and he insisted I bring it up. He said it usually means something serious is going on.

I was going to mention to him, too, that I was having foot drop in my left foot, but that is the ankle/leg (one on each side) that I broke two months ago, and I don't even know if I would still have the problem. Oh well.

Any hints on the swallowing thing. As you all can tell, I have been having an extra rough time of it lately. I try to buck up and not mention it to anyone around here, but it is getting overwhelming again.

[Guest guest]

What did the doctor say about the swallowing and foot?  I have the swallowing issue too, not as bad as you, so my doctor just told me to tell him if it gets worse, as he's sure it's the Sarc and were doing all we can for it now. 

I'm interested in what your doctor had to say?  And I hope your feeling better, will keep you in my prayers.  Hang in there.   MarlaJust one day at a time, That's all God ask of us. for there never really is a tomorrow, as that too

is just today:)  

 

My husband told me last night that it was very obvious that I am having trouble swallowing.  I have known that for some time, but as that symptom has come and gone over my sarc years (15 now) I wasn't paying it much attention.  I am having quite a time swallowing my medication and anything " crumbly " , plus things keep going down the wrong pipe for no reason at all.  I am going to see Dr. Baughman today, and he insisted I bring it up.  He said it usually means something serious is going on.

I was going to mention to him, too, that I was having foot drop in my left foot, but that is the ankle/leg (one on each side) that I broke two months ago, and I don't even know if I would still have the problem.  Oh well.

Any hints on the

swallowing thing.  As you all can tell, I have been having an extra rough time of it lately.  I try to buck up and not mention it to anyone around here, but it is getting overwhelming again.

[Guest guest]

I went to see my sarc specialist (Dr. Baughman), and he ordered a barium swallow study. I had this problem about 13 years ago, and I remember having therapy, but I can't remember anything they taught me. Go figure.To: Neurosarcoidosis Sent: Wed, February 23, 2011 3:03:04 PMSubject: Re: Swallowing

I have problems with swallowing at times also. I go through times where I aspirate food very easily, especially dry, powdery, crumbly things. It feels like my epiglottis (the flap that closes the trachea when you swallow) was not working well. I went to Massachusetts General Hospital and had swallowing studies done (fluoroscopy or motion x-rays done while eating and swallowing different foods or liquids) Of course it wasn't bothering me when I had the tests done so I have no definitive diagnosis. They told me that they have a swallowing specialists teach you techniques to minimize the problem but I had no dx so no therapy.

I have taken to being more careful when I eat and have found that when my head is rotated either right or left it is worse. I also am more conscious when I eat not to talk until my food is completely down.

When I do aspirate food or liquid I will cough and cough and cough. I have found that using my Albuterol inhaler helps to reduce inflammatory response at that point.

Do get it checked out!

Vivien

Subject: SwallowingTo: Neurosarcoidosis Date: Wednesday, February 23, 2011, 9:12 AM

My husband told me last night that it was very obvious that I am having trouble swallowing. I have known that for some time, but as that symptom has come and gone over my sarc years (15 now) I wasn't paying it much attention. I am having quite a time swallowing my medication and anything "crumbly", plus things keep going down the wrong pipe for no reason at all. I am going to see Dr. Baughman today, and he insisted I bring it up. He said it usually means something serious is going on.

I was going to mention to him, too, that I was having foot drop in my left foot, but that is the ankle/leg (one on each side) that I broke two months ago, and I don't even know if I would still have the problem. Oh well.

Any hints on the swallowing thing. As you all can tell, I have been having an extra rough time of it lately. I try to buck up and not mention it to anyone around here, but it is getting overwhelming again.

[Guest guest]

Yes, I'm looking forward to the spring, and looking forward to walking my new puppy, too!To: Neurosarcoidosis Sent: Wed, February 23, 2011 7:02:49 PMSubject: Re: Swallowing

My gastroenterologist told me it was esophagus sarc. I didn't know what was going on. I have to use a straw to drink liquids or I choke, or they get stuck and won't go down. It doesn't matter how small a sip I take. Same thing with food, meds, it's like it gets stuck mid swallow, and it won't go down. I can point to the place it gets stuck, about 2 to 3 inches from where my neck starts underneath my head. Not to be gross, but I have had to spit out whatever was in my mouth because it would not go down. (I was raised that you never spit-suffer yes-spit no) Can you tell I had a very good "southern" mama. Anyway, as the sarc has gotten worse, this has to. I have learned to compensate - straws, and when I feel the "stuck" feeling, I

just hold, somethings for a bit, and it will finally work like it should. They even did a swallowing test, but that was not it. It's a sarc thing.

Also, sarc positively loves ankle joints. Look up sarcoidosis and ankle joints. It's like we're the buffet, and it does have favorites. There are different medications to back some of these things down. Don't dispair, if nothing else, we are a tough lot.

Also, since the warmer weather is coming up. Alot of us have issues with sun exposure. Try to be careful until you know where you stand. If I get out in the direct sunlight for 15 minutes I become so weak that I have to lie down. I am a fighter and it aggrevates me to no end, but I have no recourse, I can lie down or collapse. Maybe you'll be one of the ones it is not an issue for. I just didn't want you to run into it and not know what was happening.

Hope your feel better soon, remember Spring's coming soon; that always makes me smile. connie

To: Neurosarcoidosis Sent: Wed, February 23, 2011 9:12:10 AMSubject: Swallowing

My husband told me last night that it was very obvious that I am having trouble swallowing. I have known that for some time, but as that symptom has come and gone over my sarc years (15 now) I wasn't paying it much attention. I am having quite a time swallowing my medication and anything "crumbly", plus things keep going down the wrong pipe for no reason at all. I am going to see Dr. Baughman today, and he insisted I bring it up. He said it usually means something serious is going on.

I was going to mention to him, too, that I was having foot drop in my left foot, but that is the ankle/leg (one on each side) that I broke two months ago, and I don't even know if I would still have the problem. Oh well.

Any hints on the swallowing thing. As you all can tell, I have been having an extra rough time of it lately. I try to buck up and not mention it to anyone around here, but it is getting overwhelming again.

[Guest guest]

Well, I have become completely anal about chewing up the crumbly food until it gets good and wet, and that helps some. I agree that the swallowing gets worse when things in general are going downhill.To: Neurosarcoidosis Sent: Thu, February 24, 2011 6:52:43 AMSubject: Re:

Swallowing

I also have trouble swallowing at times. It comes and goes and it is quite painful...like I swallowed something that suddenly expanded. It usually occurs about four-five inches below where i had my medianoscopy. It happens on the first bite, or two, and i have to stop and let the 'episode' pass. I have spit up on occasion....especially fluids. It doesn't happen every time I eat. Days can go by with no flares of this and then i can have it happen several times in one day. I tend to have these episodes when i am going through a particularly rough time. I usually stop and close my eyes and breathe through it until it passes. I would think smaller bites might help and maybe chewing more thoroughly. ...but

i don't usually

remember that....lol.Life may not always be the party we hoped for, but while we're here we might as well dance!

Subject: SwallowingTo: Neurosarcoidosis Date: Wednesday, February 23, 2011, 2:12 PM

My husband told me last night that it was very obvious that I am having trouble swallowing. I have known that for some time, but as that symptom has come and gone over my sarc years (15 now) I wasn't paying it much attention. I am having quite a time swallowing my medication and anything "crumbly", plus things keep going down the wrong pipe for no reason at all. I am going to see Dr. Baughman today, and he insisted I bring it up. He said it usually means something serious is going on.

I was going to mention to him, too, that I was having foot drop in my left foot, but that is the ankle/leg (one on each side) that I broke two months ago, and I don't even know if I would still have the problem. Oh well.

Any hints on the swallowing thing. As you all can tell, I have been having an extra rough time of it lately. I try to buck up and not mention it to anyone around here, but it is getting overwhelming again.

[Guest guest]

Dr. Baughman ordered a barium swallow test. He said my ankle would probably be a long recovery, as many nerves were stretched when the foot came completely off of the leg.To: Neurosarcoidosis Sent: Thu, February 24, 2011 4:08:15 PMSubject: Re:

Swallowing

What did the doctor say about the swallowing and foot? I have the swallowing issue too, not as bad as you, so my doctor just told me to tell him if it gets worse, as he's sure it's the Sarc and were doing all we can for it now.

I'm interested in what your doctor had to say? And I hope your feeling better, will keep you in my prayers. Hang in there. MarlaJust one day at a time, That's all God ask of us. for there never really is a tomorrow, as that too

is just today:)

My husband told me last night that it was very obvious that I am having trouble swallowing. I have known that for some time, but as that symptom has come and gone over my sarc years (15 now) I wasn't paying it much attention. I am having quite a time swallowing my medication and anything "crumbly", plus things keep going down the wrong pipe for no reason at all. I am going to see Dr. Baughman today, and he insisted I bring it up. He said it usually means something serious is going on.

I was going to mention to him, too, that I was having foot drop in my left foot, but that is the ankle/leg (one on each side) that I broke two months ago, and I don't even know if I would still have the problem. Oh well.

Any hints on the

swallowing thing. As you all can tell, I have been having an extra rough time of it lately. I try to buck up and not mention it to anyone around here, but it is getting overwhelming again.

[Guest guest]

I'm glad he's looking into it for you. let us know how the test goes. MarlaJust one day at a time, That's all God ask of us. for there never really is a tomorrow, as that too

is just today:)  

 

I went to see my sarc specialist (Dr. Baughman), and he ordered a barium swallow study.  I had this problem about 13 years ago, and I remember having therapy, but I can't remember anything they taught me.  Go figure.

To: Neurosarcoidosis

Sent: Wed, February 23, 2011 3:03:04 PMSubject: Re: Swallowing

 

I have problems with swallowing at times also.  I go through times where I aspirate food very easily, especially dry, powdery, crumbly things.  It feels like my epiglottis (the flap that closes the trachea when you swallow) was not working well.   I went to Massachusetts General Hospital and had swallowing studies done (fluoroscopy or motion x-rays done while eating and swallowing different foods or liquids)  Of course it wasn't bothering me when I had the tests done so I have no definitive diagnosis.  They told me that they have a swallowing specialists teach you techniques to minimize the problem but I had no dx so no therapy. 

 

I have taken to being more careful when I eat and have found that when my head is rotated either right or left it is worse.  I also am more conscious when I eat not to talk until my food is completely down. 

 

When I do aspirate food or liquid I will cough and cough and cough.  I have found that using my Albuterol inhaler helps to reduce inflammatory response at that point.

 

Do get it checked out!

 

Vivien

Subject: SwallowingTo: Neurosarcoidosis

Date: Wednesday, February 23, 2011, 9:12 AM

My husband told me last night that it was very obvious that I am having trouble swallowing.  I have known that for some time, but as that symptom has come and gone over my sarc years (15 now) I wasn't paying it much attention.  I am having quite a time swallowing my medication and anything " crumbly " , plus things keep going down the wrong pipe for no reason at all.  I am going to see Dr. Baughman today, and he insisted I bring it up.  He said it usually means something serious is going on.

I was going to mention to him, too, that I was having foot drop in my left foot, but that is the ankle/leg (one on each side) that I broke two months ago, and I don't even know if I would still have the problem.  Oh well.

Any hints on the swallowing thing.  As you all can tell, I have been having an extra rough time of it lately.  I try to buck up and not mention it to anyone around here, but it is getting overwhelming again.

[Guest guest]

Let us know how the tests go.

Vivien

Subject: SwallowingTo: Neurosarcoidosis Date: Wednesday, February 23, 2011, 9:12 AM

My husband told me last night that it was very obvious that I am having trouble swallowing. I have known that for some time, but as that symptom has come and gone over my sarc years (15 now) I wasn't paying it much attention. I am having quite a time swallowing my medication and anything "crumbly", plus things keep going down the wrong pipe for no reason at all. I am going to see Dr. Baughman today, and he insisted I bring it up. He said it usually means something serious is going on.

I was going to mention to him, too, that I was having foot drop in my left foot, but that is the ankle/leg (one on each side) that I broke two months ago, and I don't even know if I would still have the problem. Oh well.

Any hints on the swallowing thing. As you all can tell, I have been having an extra rough time of it lately. I try to buck up and not mention it to anyone around here, but it is getting overwhelming again.

[Guest guest]

Mine is like yours, I will go for a couple of days where I don't have much problem, and then grief seems like everything I swallow messes up. Sorry, but the size of the swallow or bite doesn't help. Something about using a straw to pull the liquid up solves most of that problem.

To: Neurosarcoidosis Sent: Thu, February 24, 2011 6:52:43 AMSubject: Re: Swallowing

I also have trouble swallowing at times. It comes and goes and it is quite painful...like I swallowed something that suddenly expanded. It usually occurs about four-five inches below where i had my medianoscopy. It happens on the first bite, or two, and i have to stop and let the 'episode' pass. I have spit up on occasion....especially fluids. It doesn't happen every time I eat. Days can go by with no flares of this and then i can have it happen several times in one day. I tend to have these episodes when i am going through a particularly rough time. I usually stop and close my eyes and breathe through it until it passes. I would think smaller bites might help and maybe chewing more thoroughly. ...but i don't usually remember that....lol.Life may not always be the party we hoped for, but while we're here we might as well dance!

Subject: SwallowingTo: Neurosarcoidosis Date: Wednesday, February 23, 2011, 2:12 PM

My husband told me last night that it was very obvious that I am having trouble swallowing. I have known that for some time, but as that symptom has come and gone over my sarc years (15 now) I wasn't paying it much attention. I am having quite a time swallowing my medication and anything "crumbly", plus things keep going down the wrong pipe for no reason at all. I am going to see Dr. Baughman today, and he insisted I bring it up. He said it usually means something serious is going on.

I was going to mention to him, too, that I was having foot drop in my left foot, but that is the ankle/leg (one on each side) that I broke two months ago, and I don't even know if I would still have the problem. Oh well.

Any hints on the swallowing thing. As you all can tell, I have been having an extra rough time of it lately. I try to buck up and not mention it to anyone around here, but it is getting overwhelming again.

[Guest guest]



a few days ago a book was discussed. I have seem to lost the name and author. It is about Fibro and the likes. Could someone tell me the name of the book and the author. I want to get from the local Library.

I have been gone for a couple of days. I am experiencing a crappy flare. Up the spine and in the right eye. Loss of mobility a little. However we think we got it in time. (what ever that means) Had to increase the prednisone from 5 to 40 for a month. I hope it works.

Take it easy

Jackie

SwallowingTo: Neurosarcoidosis Date: Wednesday, February 23, 2011, 2:12 PM

My husband told me last night that it was very obvious that I am having trouble swallowing. I have known that for some time, but as that symptom has come and gone over my sarc years (15 now) I wasn't paying it much attention. I am having quite a time swallowing my medication and anything "crumbly", plus things keep going down the wrong pipe for no reason at all. I am going to see Dr. Baughman today, and he insisted I bring it up. He said it usually means something serious is going on.

I was going to mention to him, too, that I was having foot drop in my left foot, but that is the ankle/leg (one on each side) that I broke two months ago, and I don't even know if I would still have the problem. Oh well.

Any hints on the swallowing thing. As you all can tell, I have been having an extra rough time of it lately. I try to buck up and not mention it to anyone around here, but it is getting overwhelming again.

[Guest guest]

Jackie, you are not alone. I am having a flare too. I just increased my prednisone to 60 mg tapering down to 40 mg. I hope you feel better soon.

To: Neurosarcoidosis Sent: Sun, February 27, 2011 3:10:44 AMSubject: Re: Swallowing

 a few days ago a book was discussed. I have seem to lost the name and author. It is about Fibro and the likes. Could someone tell me the name of the book and the author. I want to get from the local Library.

I have been gone for a couple of days. I am experiencing a crappy flare. Up the spine and in the right eye. Loss of mobility a little. However we think we got it in time. (what ever that means) Had to increase the prednisone from 5 to 40 for a month. I hope it works.

Take it easy

Jackie

SwallowingTo: Neurosarcoidosis Date: Wednesday, February 23, 2011, 2:12 PM

My husband told me last night that it was very obvious that I am having trouble swallowing. I have known that for some time, but as that symptom has come and gone over my sarc years (15 now) I wasn't paying it much attention. I am having quite a time swallowing my medication and anything "crumbly", plus things keep going down the wrong pipe for no reason at all. I am going to see Dr. Baughman today, and he insisted I bring it up. He said it usually means something serious is going on.

I was going to mention to him, too, that I was having foot drop in my left foot, but that is the ankle/leg (one on each side) that I broke two months ago, and I don't even know if I would still have the problem. Oh well.

Any hints on the swallowing thing. As you all can tell, I have been having an extra rough time of it lately. I try to buck up and not mention it to anyone around here, but it is getting overwhelming again.

[Guest guest]

Hope you feel better soonTo: Neurosarcoidosis Sent: Sun, February 27, 2011 3:10:44 AMSubject: Re: Swallowing



a few days ago a book was discussed. I have seem to lost the name and author. It is about Fibro and the likes. Could someone tell me the name of the book and the author. I want to get from the local Library.

I have been gone for a couple of days. I am experiencing a crappy flare. Up the spine and in the right eye. Loss of mobility a little. However we think we got it in time. (what ever that means) Had to increase the prednisone from 5 to 40 for a month. I hope it works.

Take it easy

Jackie

SwallowingTo: Neurosarcoidosis Date: Wednesday, February 23, 2011, 2:12 PM

My husband told me last night that it was very obvious that I am having trouble swallowing. I have known that for some time, but as that symptom has come and gone over my sarc years (15 now) I wasn't paying it much attention. I am having quite a time swallowing my medication and anything "crumbly", plus things keep going down the wrong pipe for no reason at all. I am going to see Dr. Baughman today, and he insisted I bring it up. He said it usually means something serious is going on.

I was going to mention to him, too, that I was having foot drop in my left foot, but that is the ankle/leg (one on each side) that I broke two months ago, and I don't even know if I would still have the problem. Oh well.

Any hints on the swallowing thing. As you all can tell, I have been having an extra rough time of it lately. I try to buck up and not mention it to anyone around here, but it is getting overwhelming again.

[Guest guest]

I mentioned a book called From Fatigued to Fantastic by Teitelbaum, M.D. It was about Chronic Fatigue and Fibromyalgia.Life may not always be the party we hoped for, but while we're here we might as well dance!

Subject: SwallowingTo: Neurosarcoidosis Date: Wednesday, February 23, 2011, 2:12 PM

My husband told me last night that it was very obvious that I am having trouble swallowing. I have known that for some time, but as that symptom has come and gone over my sarc years (15 now) I wasn't paying it much attention. I am having quite a time swallowing my medication and anything "crumbly", plus things keep going down the wrong pipe for no reason at all. I am going to see Dr. Baughman today, and he insisted I bring it up. He said it usually means something serious is going on.

I was going to mention to him, too, that I was having foot drop in my left foot, but that is the ankle/leg (one on each side) that I broke two months ago, and I don't even know if I would still have the problem. Oh well.

Any hints on the swallowing thing. As you all can tell, I have been having an extra rough time of it lately. I try to buck up and not mention it to anyone around here, but it is getting overwhelming again.

[Guest guest]



Thanks That should do it.

SwallowingTo: Neurosarcoidosis Date: Wednesday, February 23, 2011, 2:12 PM

My husband told me last night that it was very obvious that I am having trouble swallowing. I have known that for some time, but as that symptom has come and gone over my sarc years (15 now) I wasn't paying it much attention. I am having quite a time swallowing my medication and anything "crumbly", plus things keep going down the wrong pipe for no reason at all. I am going to see Dr. Baughman today, and he insisted I bring it up. He said it usually means something serious is going on.

I was going to mention to him, too, that I was having foot drop in my left foot, but that is the ankle/leg (one on each side) that I broke two months ago, and I don't even know if I would still have the problem. Oh well.

Any hints on the swallowing thing. As you all can tell, I have been having an extra rough time of it lately. I try to buck up and not mention it to anyone around here, but it is getting overwhelming again.

[Guest guest]



Thank you very much. The eyesight is a little better but the spine and leg numbness is still a problem. I am saying prayers and keeping my fingers crossed.

SwallowingTo: Neurosarcoidosis Date: Wednesday, February 23, 2011, 2:12 PM

My husband told me last night that it was very obvious that I am having trouble swallowing. I have known that for some time, but as that symptom has come and gone over my sarc years (15 now) I wasn't paying it much attention. I am having quite a time swallowing my medication and anything "crumbly", plus things keep going down the wrong pipe for no reason at all. I am going to see Dr. Baughman today, and he insisted I bring it up. He said it usually means something serious is going on.

I was going to mention to him, too, that I was having foot drop in my left foot, but that is the ankle/leg (one on each side) that I broke two months ago, and I don't even know if I would still have the problem. Oh well.

Any hints on the swallowing thing. As you all can tell, I have been having an extra rough time of it lately. I try to buck up and not mention it to anyone around here, but it is getting overwhelming again.

[Guest guest]

La, I hope you feel better as well.To: Neurosarcoidosis Sent: Sun, February 27, 2011 5:20:26 PMSubject: Re: Swallowing

Jackie, you are not alone. I am having a flare too. I just increased my prednisone to 60 mg tapering down to 40 mg. I hope you feel better soon.

To: Neurosarcoidosis Sent: Sun, February 27, 2011 3:10:44 AMSubject: Re: Swallowing

 a few days ago a book was discussed. I have seem to lost the name and author. It is about Fibro and the likes. Could someone tell me the name of the book and the author. I want to get from the local Library.

I have been gone for a couple of days. I am experiencing a crappy flare. Up the spine and in the right eye. Loss of mobility a little. However we think we got it in time. (what ever that means) Had to increase the prednisone from 5 to 40 for a month. I hope it works.

Take it easy

Jackie

SwallowingTo: Neurosarcoidosis Date: Wednesday, February 23, 2011, 2:12 PM

My husband told me last night that it was very obvious that I am having trouble swallowing. I have known that for some time, but as that symptom has come and gone over my sarc years (15 now) I wasn't paying it much attention. I am having quite a time swallowing my medication and anything "crumbly", plus things keep going down the wrong pipe for no reason at all. I am going to see Dr. Baughman today, and he insisted I bring it up. He said it usually means something serious is going on.

I was going to mention to him, too, that I was having foot drop in my left foot, but that is the ankle/leg (one on each side) that I broke two months ago, and I don't even know if I would still have the problem. Oh well.

Any hints on the swallowing thing. As you all can tell, I have been having an extra rough time of it lately. I try to buck up and not mention it to anyone around here, but it is getting overwhelming again.

[Guest guest]

I'm a little late on the swallowing thread. I've had problems for probably 8-9 years. It's gotten better in the last few years (maybe since remission; not really sure). I had a swallowing study back when it started, which was normal. They had me swallow different textures & thicknesses of stuff, but of course I didn't get choked during the study! My biggest problem has always been liquids & small pills. I used to choke on my own spit a lot. The worst issue was chocolate candy bars with caramel filling; the caramel would ooze the wrong way & I might cough & choke for 20-30 min. Of course, I never told any of the docs that I was choking on caramel candy; sure didn't want to invite any lectures. Now I just have to watch out for small pills & some liquids (and caramel!)

Ramblin' RoseModerator "I child-proofed my home and they STILL get in!" (Bumper sticker)

To: Neurosarcoidosis From: conaugusta@...Date: Sat, 26 Feb 2011 20:32:01 -0800Subject: Re: Swallowing

Mine is like yours, I will go for a couple of days where I don't have much problem, and then grief seems like everything I swallow messes up. Sorry, but the size of the swallow or bite doesn't help. Something about using a straw to pull the liquid up solves most of that problem.

To: Neurosarcoidosis Sent: Thu, February 24, 2011 6:52:43 AMSubject: Re: Swallowing

I also have trouble swallowing at times. It comes and goes and it is quite painful...like I swallowed something that suddenly expanded. It usually occurs about four-five inches below where i had my medianoscopy. It happens on the first bite, or two, and i have to stop and let the 'episode' pass. I have spit up on occasion....especially fluids. It doesn't happen every time I eat. Days can go by with no flares of this and then i can have it happen several times in one day. I tend to have these episodes when i am going through a particularly rough time. I usually stop and close my eyes and breathe through it until it passes. I would think smaller bites might help and maybe chewing more thoroughly. ...but i don't usually remember that....lol.Life may not always be the party we hoped for, but while we're here we might as well dance!

Subject: SwallowingTo: Neurosarcoidosis Date: Wednesday, February 23, 2011, 2:12 PM

My husband told me last night that it was very obvious that I am having trouble swallowing. I have known that for some time, but as that symptom has come and gone over my sarc years (15 now) I wasn't paying it much attention. I am having quite a time swallowing my medication and anything "crumbly", plus things keep going down the wrong pipe for no reason at all. I am going to see Dr. Baughman today, and he insisted I bring it up. He said it usually means something serious is going on.

I was going to mention to him, too, that I was having foot drop in my left foot, but that is the ankle/leg (one on each side) that I broke two months ago, and I don't even know if I would still have the problem. Oh well.

Any hints on the swallowing thing. As you all can tell, I have been having an extra rough time of it lately. I try to buck up and not mention it to anyone around here, but it is getting overwhelming again.

[Guest guest]

Funny you say that about your own spit. I find if I get talking to fast, I will choke on my own spit too, but will also choke on water, but have no problems swallowing pills, unless they start dissolving right away, then that taste gets to me.

I also have water run out the right side of my mouth a lot, and will sometimes just not be able to swallow whats in my mouth, almost always water, and spit it with force all over, can't seem to stop it, so now I've learned to cover my mouth! 

OK enough about spit,    Take care my friend, Marla " Fear less, hope more; Eat less, chew more; Whine less, breathe more; Talk less, say more; Love more, and all good things will be yours. " - Irish Proverb  

 

I'm a little late on the swallowing thread.  I've had problems for probably 8-9 years.  It's gotten better in the last few years (maybe since remission; not really sure).  I had a swallowing study back when it started, which was normal.  They had me swallow different textures & thicknesses of stuff, but of course I didn't get choked during the study!  My biggest problem has always been liquids & small pills.  I used to choke on my own spit a lot.  The worst issue was chocolate candy bars with caramel filling; the caramel would ooze the wrong way & I might cough & choke for 20-30 min.  Of course, I never told any of the docs that I was choking on caramel candy; sure didn't want to invite any lectures.  Now I just have to watch out for small pills & some liquids (and caramel!) 

Ramblin' RoseModerator

  " I child-proofed my home and they STILL get in! "      (Bumper sticker)

 

To: Neurosarcoidosis From: conaugusta@...Date: Sat, 26 Feb 2011 20:32:01 -0800

Subject: Re: Swallowing

Mine is like yours, I will go for a couple of days where I don't have much problem, and then grief seems like everything I swallow messes up.  Sorry, but the size of the swallow or bite doesn't help.  Something about using a straw to pull the liquid up solves most of that problem.

To: Neurosarcoidosis

Sent: Thu, February 24, 2011 6:52:43 AMSubject: Re: Swallowing 

I also have trouble swallowing at times.  It comes and goes and it is quite painful...like I swallowed something that suddenly expanded. It usually occurs about four-five inches below where i had my medianoscopy.  It happens on the first bite, or two, and i have to stop and let the 'episode' pass.  I have spit up on occasion....especially fluids.  It doesn't happen every time I eat.  Days can go by with no flares of this and then i can have it happen several times in one day.  I tend to have these episodes when i am going through a particularly rough time.  I usually stop and close my eyes and breathe through it until it passes.  I would think smaller bites might help and maybe chewing more thoroughly.   ...but i don't usually remember that....lol.

Life may not always be the party we hoped for, but while we're here we might as well dance!

Subject: SwallowingTo: Neurosarcoidosis

Date: Wednesday, February 23, 2011, 2:12 PM

My husband told me last night that it was very obvious that I am having trouble swallowing.  I have known that for some time, but as that symptom has come and gone over my sarc years (15 now) I wasn't paying it much attention.  I am having quite a time swallowing my medication and anything " crumbly " , plus things keep going down the wrong pipe for no reason at all.  I am going to see Dr. Baughman today, and he insisted I bring it up.  He said it usually means something serious is going on.

I was going to mention to him, too, that I was having foot drop in my left foot, but that is the ankle/leg (one on each side) that I broke two months ago, and I don't even know if I would still have the problem.  Oh well.

Any hints on the swallowing thing.  As you all can tell, I have been having an extra rough time of it lately.  I try to buck up and not mention it to anyone around here, but it is getting overwhelming again.

[Guest guest]

and connie makes 3. I also had a normal swallow test until they had me try to swallow liquid fast, that did not go well.....somebody had to find a container quickly

To: Neurosarcoidosis Sent: Sat, March 19, 2011 3:20:27 PMSubject: Re: Swallowing

Funny you say that about your own spit. I find if I get talking to fast, I will choke on my own spit too, but will also choke on water, but have no problems swallowing pills, unless they start dissolving right away, then that taste gets to me. I also have water run out the right side of my mouth a lot, and will sometimes just not be able to swallow whats in my mouth, almost always water, and spit it with force all over, can't seem to stop it, so now I've learned to cover my mouth! OK enough about spit, Take care my friend, Marla "Fear less, hope more; Eat less, chew more; Whine less, breathe more; Talk less, say more; Love more, and all good things will be yours." - Irish Proverb

I'm a little late on the swallowing thread. I've had problems for probably 8-9 years. It's gotten better in the last few years (maybe since remission; not really sure). I had a swallowing study back when it started, which was normal. They had me swallow different textures & thicknesses of stuff, but of course I didn't get choked during the study! My biggest problem has always been liquids & small pills. I used to choke on my own spit a lot. The worst issue was chocolate candy bars with caramel filling; the caramel would ooze the wrong way & I might cough & choke for 20-30 min. Of course, I never told any of the docs that I was choking on caramel candy; sure didn't want to invite any lectures. Now I just have to watch out for small pills & some liquids (and caramel!)

Ramblin' RoseModerator "I child-proofed my home and they STILL get in!" (Bumper sticker)

To: Neurosarcoidosis From: conaugusta@...Date: Sat, 26 Feb 2011 20:32:01 -0800Subject: Re: Swallowing

Mine is like yours, I will go for a couple of days where I don't have much problem, and then grief seems like everything I swallow messes up. Sorry, but the size of the swallow or bite doesn't help. Something about using a straw to pull the liquid up solves most of that problem.

To: Neurosarcoidosis Sent: Thu, February 24, 2011 6:52:43 AMSubject: Re: Swallowing

I also have trouble swallowing at times. It comes and goes and it is quite painful...like I swallowed something that suddenly expanded. It usually occurs about four-five inches below where i had my medianoscopy. It happens on the first bite, or two, and i have to stop and let the 'episode' pass. I have spit up on occasion....especially fluids. It doesn't happen every time I eat. Days can go by with no flares of this and then i can have it happen several times in one day. I tend to have these episodes when i am going through a particularly rough time. I usually stop and close my eyes and breathe through it until it passes. I would think smaller bites might help and maybe chewing more thoroughly. ...but i don't usually remember that....lol.Life may not always be the party we hoped for, but while we're here we might as well dance!

Subject: SwallowingTo: Neurosarcoidosis Date: Wednesday, February 23, 2011, 2:12 PM

My husband told me last night that it was very obvious that I am having trouble swallowing. I have known that for some time, but as that symptom has come and gone over my sarc years (15 now) I wasn't paying it much attention. I am having quite a time swallowing my medication and anything "crumbly", plus things keep going down the wrong pipe for no reason at all. I am going to see Dr. Baughman today, and he insisted I bring it up. He said it usually means something serious is going on.

I was going to mention to him, too, that I was having foot drop in my left foot, but that is the ankle/leg (one on each side) that I broke two months ago, and I don't even know if I would still have the problem. Oh well.

Any hints on the swallowing thing. As you all can tell, I have been having an extra rough time of it lately. I try to buck up and not mention it to anyone around here, but it is getting overwhelming again.

[Guest guest]

Ya it's fun to spray the whole table with a mouth full of water, I feel so bad, the family understands but others look at me funny. (I don't care anymore) if you know what I mean.

Marla " Fear less, hope more; Eat less, chew more; Whine less, breathe more; Talk less, say more; Love more, and all good things will be yours. " - Irish Proverb  

 

and connie makes 3.  I also had a normal swallow test until they had me try to swallow liquid fast, that did not go well.....somebody had to find a container quickly

To: Neurosarcoidosis

Sent: Sat, March 19, 2011 3:20:27 PMSubject: Re: Swallowing

 

Funny you say that about your own spit. I find if I get talking to fast, I will choke on my own spit too, but will also choke on water, but have no problems swallowing pills, unless they start dissolving right away, then that taste gets to me.

I also have water run out the right side of my mouth a lot, and will sometimes just not be able to swallow whats in my mouth, almost always water, and spit it with force all over, can't seem to stop it, so now I've learned to cover my mouth! 

OK enough about spit,    Take care my friend, Marla " Fear less, hope more; Eat less, chew more; Whine less, breathe more; Talk less, say more; Love more, and all good things will be yours. " - Irish Proverb  

 

I'm a little late on the swallowing thread.  I've had problems for probably 8-9 years.  It's gotten better in the last few years (maybe since remission; not really sure).  I had a swallowing study back when it started, which was normal.  They had me swallow different textures & thicknesses of stuff, but of course I didn't get choked during the study!  My biggest problem has always been liquids & small pills.  I used to choke on my own spit a lot.  The worst issue was chocolate candy bars with caramel filling; the caramel would ooze the wrong way & I might cough & choke for 20-30 min.  Of course, I never told any of the docs that I was choking on caramel candy; sure didn't want to invite any lectures.  Now I just have to watch out for small pills & some liquids (and caramel!) 

Ramblin' RoseModerator

  " I child-proofed my home and they STILL get in! "      (Bumper sticker)

 

To: Neurosarcoidosis From: conaugusta@...

Date: Sat, 26 Feb 2011 20:32:01 -0800Subject: Re: Swallowing

Mine is like yours, I will go for a couple of days where I don't have much problem, and then grief seems like everything I swallow messes up.  Sorry, but the size of the swallow or bite doesn't help.  Something about using a straw to pull the liquid up solves most of that problem.

To: Neurosarcoidosis

Sent: Thu, February 24, 2011 6:52:43 AMSubject: Re: Swallowing 

I also have trouble swallowing at times.  It comes and goes and it is quite painful...like I swallowed something that suddenly expanded. It usually occurs about four-five inches below where i had my medianoscopy.  It happens on the first bite, or two, and i have to stop and let the 'episode' pass.  I have spit up on occasion....especially fluids.  It doesn't happen every time I eat.  Days can go by with no flares of this and then i can have it happen several times in one day.  I tend to have these episodes when i am going through a particularly rough time.  I usually stop and close my eyes and breathe through it until it passes.  I would think smaller bites might help and maybe chewing more thoroughly.   ...but i don't usually remember that....lol.

Life may not always be the party we hoped for, but while we're here we might as well dance!

Subject: Swallowing

To: Neurosarcoidosis Date: Wednesday, February 23, 2011, 2:12 PM

My husband told me last night that it was very obvious that I am having trouble swallowing.  I have known that for some time, but as that symptom has come and gone over my sarc years (15 now) I wasn't paying it much attention.  I am having quite a time swallowing my medication and anything " crumbly " , plus things keep going down the wrong pipe for no reason at all.  I am going to see Dr. Baughman today, and he insisted I bring it up.  He said it usually means something serious is going on.

I was going to mention to him, too, that I was having foot drop in my left foot, but that is the ankle/leg (one on each side) that I broke two months ago, and I don't even know if I would still have the problem.  Oh well.

Any hints on the swallowing thing.  As you all can tell, I have been having an extra rough time of it lately.  I try to buck up and not mention it to anyone around here, but it is getting overwhelming again.

[Guest guest]

I didn't do that from swallowing problems, but when I had the bad sarc cough, I would start coughing & then choke, spewing coffee or whatever all over the place. The nurses learned to stay to the side or at a distance when I had a drink.

Ramblin' RoseModerator "I child-proofed my home and they STILL get in!" (Bumper sticker)

To: Neurosarcoidosis From: mebramer@...Date: Sun, 20 Mar 2011 15:42:29 -0600Subject: Re: Swallowing

Ya it's fun to spray the whole table with a mouth full of water, I feel so bad, the family understands but others look at me funny. (I don't care anymore) if you know what I mean. Marla "Fear less, hope more; Eat less, chew more; Whine less, breathe more; Talk less, say more; Love more, and all good things will be yours." - Irish Proverb

and connie makes 3. I also had a normal swallow test until they had me try to swallow liquid fast, that did not go well.....somebody had to find a container quickly

To: Neurosarcoidosis Sent: Sat, March 19, 2011 3:20:27 PMSubject: Re: Swallowing

Funny you say that about your own spit. I find if I get talking to fast, I will choke on my own spit too, but will also choke on water, but have no problems swallowing pills, unless they start dissolving right away, then that taste gets to me. I also have water run out the right side of my mouth a lot, and will sometimes just not be able to swallow whats in my mouth, almost always water, and spit it with force all over, can't seem to stop it, so now I've learned to cover my mouth! OK enough about spit, Take care my friend, Marla "Fear less, hope more; Eat less, chew more; Whine less, breathe more; Talk less, say more; Love more, and all good things will be yours." - Irish Proverb

I'm a little late on the swallowing thread. I've had problems for probably 8-9 years. It's gotten better in the last few years (maybe since remission; not really sure). I had a swallowing study back when it started, which was normal. They had me swallow different textures & thicknesses of stuff, but of course I didn't get choked during the study! My biggest problem has always been liquids & small pills. I used to choke on my own spit a lot. The worst issue was chocolate candy bars with caramel filling; the caramel would ooze the wrong way & I might cough & choke for 20-30 min. Of course, I never told any of the docs that I was choking on caramel candy; sure didn't want to invite any lectures. Now I just have to watch out for small pills & some liquids (and caramel!)

Ramblin' RoseModerator "I child-proofed my home and they STILL get in!" (Bumper sticker)

To: Neurosarcoidosis From: conaugusta@...Date: Sat, 26 Feb 2011 20:32:01 -0800Subject: Re: Swallowing

Mine is like yours, I will go for a couple of days where I don't have much problem, and then grief seems like everything I swallow messes up. Sorry, but the size of the swallow or bite doesn't help. Something about using a straw to pull the liquid up solves most of that problem.

To: Neurosarcoidosis Sent: Thu, February 24, 2011 6:52:43 AMSubject: Re: Swallowing

I also have trouble swallowing at times. It comes and goes and it is quite painful...like I swallowed something that suddenly expanded. It usually occurs about four-five inches below where i had my medianoscopy. It happens on the first bite, or two, and i have to stop and let the 'episode' pass. I have spit up on occasion....especially fluids. It doesn't happen every time I eat. Days can go by with no flares of this and then i can have it happen several times in one day. I tend to have these episodes when i am going through a particularly rough time. I usually stop and close my eyes and breathe through it until it passes. I would think smaller bites might help and maybe chewing more thoroughly. ...but i don't usually remember that....lol.Life may not always be the party we hoped for, but while we're here we might as well dance!

Subject: SwallowingTo: Neurosarcoidosis Date: Wednesday, February 23, 2011, 2:12 PM

My husband told me last night that it was very obvious that I am having trouble swallowing. I have known that for some time, but as that symptom has come and gone over my sarc years (15 now) I wasn't paying it much attention. I am having quite a time swallowing my medication and anything "crumbly", plus things keep going down the wrong pipe for no reason at all. I am going to see Dr. Baughman today, and he insisted I bring it up. He said it usually means something serious is going on.

I was going to mention to him, too, that I was having foot drop in my left foot, but that is the ankle/leg (one on each side) that I broke two months ago, and I don't even know if I would still have the problem. Oh well.

Any hints on the swallowing thing. As you all can tell, I have been having an extra rough time of it lately. I try to buck up and not mention it to anyone around here, but it is getting overwhelming again.