guillain barre syndrome & cystic fibrosis?

A

aleeesadarling

New member
Hi there! I rarely post here but I was diagnosed with guillain barre (miller fischer variant) in January of this year. I was just wondering if anyone here has ever had this unfortunate health problem on top of CF? I have CF also, and before I was diagnosed with GBS I was about 70% baseline on my PFT's and now I am around 35-40%. It's definitely harder for me to breathe, and I can't do a lot of things such as hike and swim and run etc without taking a crazy amount of breaks. I am now being sent to the transplant team for evaluation because my lungs are getting worse. When "normal people" (so to speak), get GBS, they are usually on ventilators and go into respiratory failure, well SOME HOW (must have been a miracle), I didn't need to be hooked up to a ventilator or life support. Anyways, if you want to look up GBS you can so you get a better understanding of it, but basically it is a auto-immune disease, where your immune system attacks your nervous system. So all my nerves were damaged and I was completely paralyzed all over, and my vision was severely damaged for a while. I made a fast recovery compared to a lot of GBS patients who normally are in the hospital up to 6mos-1yr, and I was there for 55 days. I am completely recovered as far as walking, and moving, and paralysis goes, but my it took the biggest toll on my lungs. It would be great to be able to talk to someone who has gone through this as well as CF to see how it has affected them. I don't know if i'll have any luck, but I thought it was worth a shot. Anyways God Bless!

Alyssa
 
A

aleeesadarling

New member
Hi there! I rarely post here but I was diagnosed with guillain barre (miller fischer variant) in January of this year. I was just wondering if anyone here has ever had this unfortunate health problem on top of CF? I have CF also, and before I was diagnosed with GBS I was about 70% baseline on my PFT's and now I am around 35-40%. It's definitely harder for me to breathe, and I can't do a lot of things such as hike and swim and run etc without taking a crazy amount of breaks. I am now being sent to the transplant team for evaluation because my lungs are getting worse. When "normal people" (so to speak), get GBS, they are usually on ventilators and go into respiratory failure, well SOME HOW (must have been a miracle), I didn't need to be hooked up to a ventilator or life support. Anyways, if you want to look up GBS you can so you get a better understanding of it, but basically it is a auto-immune disease, where your immune system attacks your nervous system. So all my nerves were damaged and I was completely paralyzed all over, and my vision was severely damaged for a while. I made a fast recovery compared to a lot of GBS patients who normally are in the hospital up to 6mos-1yr, and I was there for 55 days. I am completely recovered as far as walking, and moving, and paralysis goes, but my it took the biggest toll on my lungs. It would be great to be able to talk to someone who has gone through this as well as CF to see how it has affected them. I don't know if i'll have any luck, but I thought it was worth a shot. Anyways God Bless!

Alyssa
 
A

aleeesadarling

New member
Hi there! I rarely post here but I was diagnosed with guillain barre (miller fischer variant) in January of this year. I was just wondering if anyone here has ever had this unfortunate health problem on top of CF? I have CF also, and before I was diagnosed with GBS I was about 70% baseline on my PFT's and now I am around 35-40%. It's definitely harder for me to breathe, and I can't do a lot of things such as hike and swim and run etc without taking a crazy amount of breaks. I am now being sent to the transplant team for evaluation because my lungs are getting worse. When "normal people" (so to speak), get GBS, they are usually on ventilators and go into respiratory failure, well SOME HOW (must have been a miracle), I didn't need to be hooked up to a ventilator or life support. Anyways, if you want to look up GBS you can so you get a better understanding of it, but basically it is a auto-immune disease, where your immune system attacks your nervous system. So all my nerves were damaged and I was completely paralyzed all over, and my vision was severely damaged for a while. I made a fast recovery compared to a lot of GBS patients who normally are in the hospital up to 6mos-1yr, and I was there for 55 days. I am completely recovered as far as walking, and moving, and paralysis goes, but my it took the biggest toll on my lungs. It would be great to be able to talk to someone who has gone through this as well as CF to see how it has affected them. I don't know if i'll have any luck, but I thought it was worth a shot. Anyways God Bless!

Alyssa
 
A

aleeesadarling

New member
Hi there! I rarely post here but I was diagnosed with guillain barre (miller fischer variant) in January of this year. I was just wondering if anyone here has ever had this unfortunate health problem on top of CF? I have CF also, and before I was diagnosed with GBS I was about 70% baseline on my PFT's and now I am around 35-40%. It's definitely harder for me to breathe, and I can't do a lot of things such as hike and swim and run etc without taking a crazy amount of breaks. I am now being sent to the transplant team for evaluation because my lungs are getting worse. When "normal people" (so to speak), get GBS, they are usually on ventilators and go into respiratory failure, well SOME HOW (must have been a miracle), I didn't need to be hooked up to a ventilator or life support. Anyways, if you want to look up GBS you can so you get a better understanding of it, but basically it is a auto-immune disease, where your immune system attacks your nervous system. So all my nerves were damaged and I was completely paralyzed all over, and my vision was severely damaged for a while. I made a fast recovery compared to a lot of GBS patients who normally are in the hospital up to 6mos-1yr, and I was there for 55 days. I am completely recovered as far as walking, and moving, and paralysis goes, but my it took the biggest toll on my lungs. It would be great to be able to talk to someone who has gone through this as well as CF to see how it has affected them. I don't know if i'll have any luck, but I thought it was worth a shot. Anyways God Bless!

Alyssa
 
A

aleeesadarling

New member
Hi there! I rarely post here but I was diagnosed with guillain barre (miller fischer variant) in January of this year. I was just wondering if anyone here has ever had this unfortunate health problem on top of CF? I have CF also, and before I was diagnosed with GBS I was about 70% baseline on my PFT's and now I am around 35-40%. It's definitely harder for me to breathe, and I can't do a lot of things such as hike and swim and run etc without taking a crazy amount of breaks. I am now being sent to the transplant team for evaluation because my lungs are getting worse. When "normal people" (so to speak), get GBS, they are usually on ventilators and go into respiratory failure, well SOME HOW (must have been a miracle), I didn't need to be hooked up to a ventilator or life support. Anyways, if you want to look up GBS you can so you get a better understanding of it, but basically it is a auto-immune disease, where your immune system attacks your nervous system. So all my nerves were damaged and I was completely paralyzed all over, and my vision was severely damaged for a while. I made a fast recovery compared to a lot of GBS patients who normally are in the hospital up to 6mos-1yr, and I was there for 55 days. I am completely recovered as far as walking, and moving, and paralysis goes, but my it took the biggest toll on my lungs. It would be great to be able to talk to someone who has gone through this as well as CF to see how it has affected them. I don't know if i'll have any luck, but I thought it was worth a shot. Anyways God Bless!
<br />
<br />Alyssa
 
D

dasjsmum

New member
Wow! That is really..I dont know what words to use! Terrible disease, awesome recovery, powerful testimony to your resilience, thanks <img src="">

Just as an interesting aside, not wanting to hi jack your thread, but my son as developed type 1 diabetes, which is also an autoimmune disease. I wonder if there some connection between cf and the potential of developing an auto immune disease? Just an interesting thought.

I dont know anything about this disease, but will have a look on google at it. I think you're amazing Alyssa.

So I had a quick look and it looks like it's something you recover from? It said on Wiki that you could catch it from flu vaccine and apparently people caught it when they had a swine flu vaccine in the 70's., but they dont really know what causes it.
 
D

dasjsmum

New member
Wow! That is really..I dont know what words to use! Terrible disease, awesome recovery, powerful testimony to your resilience, thanks <img src="">

Just as an interesting aside, not wanting to hi jack your thread, but my son as developed type 1 diabetes, which is also an autoimmune disease. I wonder if there some connection between cf and the potential of developing an auto immune disease? Just an interesting thought.

I dont know anything about this disease, but will have a look on google at it. I think you're amazing Alyssa.

So I had a quick look and it looks like it's something you recover from? It said on Wiki that you could catch it from flu vaccine and apparently people caught it when they had a swine flu vaccine in the 70's., but they dont really know what causes it.
 
D

dasjsmum

New member
Wow! That is really..I dont know what words to use! Terrible disease, awesome recovery, powerful testimony to your resilience, thanks <img src="">

Just as an interesting aside, not wanting to hi jack your thread, but my son as developed type 1 diabetes, which is also an autoimmune disease. I wonder if there some connection between cf and the potential of developing an auto immune disease? Just an interesting thought.

I dont know anything about this disease, but will have a look on google at it. I think you're amazing Alyssa.

So I had a quick look and it looks like it's something you recover from? It said on Wiki that you could catch it from flu vaccine and apparently people caught it when they had a swine flu vaccine in the 70's., but they dont really know what causes it.
 
D

dasjsmum

New member
Wow! That is really..I dont know what words to use! Terrible disease, awesome recovery, powerful testimony to your resilience, thanks <img src="">

Just as an interesting aside, not wanting to hi jack your thread, but my son as developed type 1 diabetes, which is also an autoimmune disease. I wonder if there some connection between cf and the potential of developing an auto immune disease? Just an interesting thought.

I dont know anything about this disease, but will have a look on google at it. I think you're amazing Alyssa.

So I had a quick look and it looks like it's something you recover from? It said on Wiki that you could catch it from flu vaccine and apparently people caught it when they had a swine flu vaccine in the 70's., but they dont really know what causes it.
 
D

dasjsmum

New member
Wow! That is really..I dont know what words to use! Terrible disease, awesome recovery, powerful testimony to your resilience, thanks <img src="">
<br />
<br />Just as an interesting aside, not wanting to hi jack your thread, but my son as developed type 1 diabetes, which is also an autoimmune disease. I wonder if there some connection between cf and the potential of developing an auto immune disease? Just an interesting thought.
<br />
<br />I dont know anything about this disease, but will have a look on google at it. I think you're amazing Alyssa.
<br />
<br />So I had a quick look and it looks like it's something you recover from? It said on Wiki that you could catch it from flu vaccine and apparently people caught it when they had a swine flu vaccine in the 70's., but they dont really know what causes it.
 
A

aleeesadarling

New member
<div class="FTQUOTE"><begin quote><i>Originally posted by: <b>jbrandonAW</b></i>

Do you know what caused it?</end quote></div>

Well, as dasjsmum said below you, it can be given by flu vaccination, but the percentage of that happening is rare. It can also be be given by several other vaccinations, after surgery, or after a really bad infection of the body. My guess is that since many auto immune diseases come from a low immune system & bad infections, that one of my chest infections triggered it. They say if you eat raw chicken and ingest the cambybacterialosis(SP?) bug, that can cause it too. I know i can scratch the flu shot off the list because oddly this was the first year i DIDN'T recieve the flu shot in my whole life, which wasn't a good idea, because CFers are typically supposed to have 1-2 flu shots every year. Now since I have a history of GBS I can not get a flu shot for 5 years of my GBS. GBS can in rare cases relapse. That's why it is smart to stay away from raw chicken, always wash your hands, no vaccinations unless otherwise consulted with your GBS doctor (neurologist, i learned the hard way that CF specialist don't know much about this disease), and try to stay away from sick people and getting sick as much as you can! (which is pretty much impossible for us CFers eh? lol).

And as to dasjsmum, I am guessing that their could be a very high possibility! But on the other hand, i'm going to say it's a tough call, just because potentionally a LOT of CFers develop some sort of diabetes before they are in their 20's. They mainly get CFRD, but since with diabetes it is a pancreatic issue, as well as CF, i'm assuming type1 can be associated with it somehow. But I do think that getting sick and having a low immune system can play a big role in it too. I think that would be a great thing to ask the doctor, because I myself, don't even have diabetes (knock on wood), but at the same time I am preparing myself for it, and I am trying to stay as healthy as I can so I can prevent it. Good luck with your son <img src="i/expressions/face-icon-small-smile.gif" border="0">

Alyssa
 
A

aleeesadarling

New member
<div class="FTQUOTE"><begin quote><i>Originally posted by: <b>jbrandonAW</b></i>

Do you know what caused it?</end quote></div>

Well, as dasjsmum said below you, it can be given by flu vaccination, but the percentage of that happening is rare. It can also be be given by several other vaccinations, after surgery, or after a really bad infection of the body. My guess is that since many auto immune diseases come from a low immune system & bad infections, that one of my chest infections triggered it. They say if you eat raw chicken and ingest the cambybacterialosis(SP?) bug, that can cause it too. I know i can scratch the flu shot off the list because oddly this was the first year i DIDN'T recieve the flu shot in my whole life, which wasn't a good idea, because CFers are typically supposed to have 1-2 flu shots every year. Now since I have a history of GBS I can not get a flu shot for 5 years of my GBS. GBS can in rare cases relapse. That's why it is smart to stay away from raw chicken, always wash your hands, no vaccinations unless otherwise consulted with your GBS doctor (neurologist, i learned the hard way that CF specialist don't know much about this disease), and try to stay away from sick people and getting sick as much as you can! (which is pretty much impossible for us CFers eh? lol).

And as to dasjsmum, I am guessing that their could be a very high possibility! But on the other hand, i'm going to say it's a tough call, just because potentionally a LOT of CFers develop some sort of diabetes before they are in their 20's. They mainly get CFRD, but since with diabetes it is a pancreatic issue, as well as CF, i'm assuming type1 can be associated with it somehow. But I do think that getting sick and having a low immune system can play a big role in it too. I think that would be a great thing to ask the doctor, because I myself, don't even have diabetes (knock on wood), but at the same time I am preparing myself for it, and I am trying to stay as healthy as I can so I can prevent it. Good luck with your son <img src="i/expressions/face-icon-small-smile.gif" border="0">

Alyssa
 
A

aleeesadarling

New member
<div class="FTQUOTE"><begin quote><i>Originally posted by: <b>jbrandonAW</b></i>

Do you know what caused it?</end quote></div>

Well, as dasjsmum said below you, it can be given by flu vaccination, but the percentage of that happening is rare. It can also be be given by several other vaccinations, after surgery, or after a really bad infection of the body. My guess is that since many auto immune diseases come from a low immune system & bad infections, that one of my chest infections triggered it. They say if you eat raw chicken and ingest the cambybacterialosis(SP?) bug, that can cause it too. I know i can scratch the flu shot off the list because oddly this was the first year i DIDN'T recieve the flu shot in my whole life, which wasn't a good idea, because CFers are typically supposed to have 1-2 flu shots every year. Now since I have a history of GBS I can not get a flu shot for 5 years of my GBS. GBS can in rare cases relapse. That's why it is smart to stay away from raw chicken, always wash your hands, no vaccinations unless otherwise consulted with your GBS doctor (neurologist, i learned the hard way that CF specialist don't know much about this disease), and try to stay away from sick people and getting sick as much as you can! (which is pretty much impossible for us CFers eh? lol).

And as to dasjsmum, I am guessing that their could be a very high possibility! But on the other hand, i'm going to say it's a tough call, just because potentionally a LOT of CFers develop some sort of diabetes before they are in their 20's. They mainly get CFRD, but since with diabetes it is a pancreatic issue, as well as CF, i'm assuming type1 can be associated with it somehow. But I do think that getting sick and having a low immune system can play a big role in it too. I think that would be a great thing to ask the doctor, because I myself, don't even have diabetes (knock on wood), but at the same time I am preparing myself for it, and I am trying to stay as healthy as I can so I can prevent it. Good luck with your son <img src="i/expressions/face-icon-small-smile.gif" border="0">

Alyssa
 
A

aleeesadarling

New member
<div class="FTQUOTE"><begin quote><i>Originally posted by: <b>jbrandonAW</b></i>

Do you know what caused it?</end quote>

Well, as dasjsmum said below you, it can be given by flu vaccination, but the percentage of that happening is rare. It can also be be given by several other vaccinations, after surgery, or after a really bad infection of the body. My guess is that since many auto immune diseases come from a low immune system & bad infections, that one of my chest infections triggered it. They say if you eat raw chicken and ingest the cambybacterialosis(SP?) bug, that can cause it too. I know i can scratch the flu shot off the list because oddly this was the first year i DIDN'T recieve the flu shot in my whole life, which wasn't a good idea, because CFers are typically supposed to have 1-2 flu shots every year. Now since I have a history of GBS I can not get a flu shot for 5 years of my GBS. GBS can in rare cases relapse. That's why it is smart to stay away from raw chicken, always wash your hands, no vaccinations unless otherwise consulted with your GBS doctor (neurologist, i learned the hard way that CF specialist don't know much about this disease), and try to stay away from sick people and getting sick as much as you can! (which is pretty much impossible for us CFers eh? lol).

And as to dasjsmum, I am guessing that their could be a very high possibility! But on the other hand, i'm going to say it's a tough call, just because potentionally a LOT of CFers develop some sort of diabetes before they are in their 20's. They mainly get CFRD, but since with diabetes it is a pancreatic issue, as well as CF, i'm assuming type1 can be associated with it somehow. But I do think that getting sick and having a low immune system can play a big role in it too. I think that would be a great thing to ask the doctor, because I myself, don't even have diabetes (knock on wood), but at the same time I am preparing myself for it, and I am trying to stay as healthy as I can so I can prevent it. Good luck with your son <img src="i/expressions/face-icon-small-smile.gif" border="0">

Alyssa
 
A

aleeesadarling

New member
<div class="FTQUOTE"><begin quote><i>Originally posted by: <b>jbrandonAW</b></i>
<br />
<br />Do you know what caused it?</end quote>
<br />
<br />Well, as dasjsmum said below you, it can be given by flu vaccination, but the percentage of that happening is rare. It can also be be given by several other vaccinations, after surgery, or after a really bad infection of the body. My guess is that since many auto immune diseases come from a low immune system & bad infections, that one of my chest infections triggered it. They say if you eat raw chicken and ingest the cambybacterialosis(SP?) bug, that can cause it too. I know i can scratch the flu shot off the list because oddly this was the first year i DIDN'T recieve the flu shot in my whole life, which wasn't a good idea, because CFers are typically supposed to have 1-2 flu shots every year. Now since I have a history of GBS I can not get a flu shot for 5 years of my GBS. GBS can in rare cases relapse. That's why it is smart to stay away from raw chicken, always wash your hands, no vaccinations unless otherwise consulted with your GBS doctor (neurologist, i learned the hard way that CF specialist don't know much about this disease), and try to stay away from sick people and getting sick as much as you can! (which is pretty much impossible for us CFers eh? lol).
<br />
<br />And as to dasjsmum, I am guessing that their could be a very high possibility! But on the other hand, i'm going to say it's a tough call, just because potentionally a LOT of CFers develop some sort of diabetes before they are in their 20's. They mainly get CFRD, but since with diabetes it is a pancreatic issue, as well as CF, i'm assuming type1 can be associated with it somehow. But I do think that getting sick and having a low immune system can play a big role in it too. I think that would be a great thing to ask the doctor, because I myself, don't even have diabetes (knock on wood), but at the same time I am preparing myself for it, and I am trying to stay as healthy as I can so I can prevent it. Good luck with your son <img src="i/expressions/face-icon-small-smile.gif" border="0">
<br />
<br />Alyssa
 
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