Fwd: {cidpusa} Re: A question
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BARBARA
Feb 9, 2008, 9:56:56 PM2/9/08
to cid...@googlegroups.com
Ron
So with what you are saying then what does a person do when they just keep running into brick walls and no one seems to want to take the risk? After four years going on five I am reaching the point of giving up! I didn't ask to be this sick and loost my ability to walk right and not hurt and all of the things that I have had come on me in the past four years. I am tired of the falling and everything else that is going along with what ever this is that no Doc can seem to put a diagnoise too! I have become known to my Neurologist as his Idiotpathtic patient!
Barb
Barbara AKA hunny_bunny54
XOXOXOXOXO
XOXOXOXOXO
http://groups.yahoo.com/group/Heart_Writings/ group owner, a creative writing groups
http://groups.yahoo.com/group/PassionsOfLife
Looking for last minute shopping deals? Find them fast with Yahoo! Search.
Faezeh
Feb 10, 2008, 1:54:06 AM2/10/08
to CIDP
Thank you very much for replying my question. Actually my mum who had
been diognosed with CIDP 3 years ago, has been getting weaker and
weaker.16 treatments with IVIG and using Prednisolone seem to be
useless.
I sent all of her documents to an Md in another city and he believes
that the EMG doesn't match with CIDP and should be repeated. Although
my mum's MD had done nerve biopsy and still he is sure that the
disease is CIDP, we will take mum to visit this MD to see what will
happen.
Thank you again and wish soon recovery for all patients.
Faezeh
On Feb 10, 5:56 am, BARBARA <hunny_bunn...@yahoo.com> wrote:
> Ron
> So with what you are saying then what does a person do when they just keep running into brick walls and no one seems to want to take the risk? After four years going on five I am reaching the point of giving up! I didn't ask to be this sick and loost my ability to walk right and not hurt and all of the things that I have had come on me in the past four years. I am tired of the falling and everything else that is going along with what ever this is that no Doc can seem to put a diagnoise too! I have become known to my Neurologist as his Idiotpathtic patient!
> Barb
>
> Barbara AKA hunny_bunny54
> XOXOXOXOXO
>
> http://groups.yahoo.com/group/Heart_Writings/group owner, a creative writing groups
> http://groups.yahoo.com/group/PassionsOfLife
>
> ---------------------------------
>
> There are many diseases which mimic CIDP, for all diseases there is a treatment.
> People have been told that IgM DEICIENCY CANNOT GET BETTER BUT IT DOES.
>
> IgA defciency is there but we have treated these people and they did
> get better. There is no excuse in not getting better .
>
> Ron
>
> On 2/8/08, BARBARA <hunny_bunn...@yahoo.com> wrote:
>
>
>
>
>
> > I was told that even though my symptoms are very real and very much the same
> > as many here in the CIDP group that the Neurologist in Chicago felt that I
> > might not have CIDP! He felt that my symptoms were more displayed to being
> > IgA deficient rather than IGg deficient. So here I am still without
> > treatment and my symptoms continue to progress. I have not been able to
> > find a lot about IgA deficiency. So I don't know any more than this. But
> > if it gives you something to research to help you then I hope my small input
> > will help.
> > Barbara
>
> > Barbara AKA hunny_bunny54
> > XOXOXOXOXO
>
> > http://groups.yahoo.com/group/Heart_Writings/group owner, a creative
> > writing groups
> > http://groups.yahoo.com/group/PassionsOfLife
>
> > ---------------------------------
> > Never miss a thing. Make Yahoo your homepage.
>
> --
> I.K
>
> >
> - Show quoted text -
been diognosed with CIDP 3 years ago, has been getting weaker and
weaker.16 treatments with IVIG and using Prednisolone seem to be
useless.
I sent all of her documents to an Md in another city and he believes
that the EMG doesn't match with CIDP and should be repeated. Although
my mum's MD had done nerve biopsy and still he is sure that the
disease is CIDP, we will take mum to visit this MD to see what will
happen.
Thank you again and wish soon recovery for all patients.
Faezeh
On Feb 10, 5:56 am, BARBARA <hunny_bunn...@yahoo.com> wrote:
> Ron
> So with what you are saying then what does a person do when they just keep running into brick walls and no one seems to want to take the risk? After four years going on five I am reaching the point of giving up! I didn't ask to be this sick and loost my ability to walk right and not hurt and all of the things that I have had come on me in the past four years. I am tired of the falling and everything else that is going along with what ever this is that no Doc can seem to put a diagnoise too! I have become known to my Neurologist as his Idiotpathtic patient!
> Barb
>
> Barbara AKA hunny_bunny54
> XOXOXOXOXO
>
> http://groups.yahoo.com/group/PassionsOfLife
>
> ---------------------------------
> Looking for last minute shopping deals? Find them fast with Yahoo! Search.
>
>
>
> [ Attached Message ]From:"Imran Khan" <imran.kha...@gmail.com>To:cid...@googlegroups.comDate:Fri, 8 Feb 2008 09:39:32 +0500Local:Fri, Feb 8 2008 7:39 amSubject:{cidpusa} Re: A question
>
>
>
>
> There are many diseases which mimic CIDP, for all diseases there is a treatment.
> People have been told that IgM DEICIENCY CANNOT GET BETTER BUT IT DOES.
>
> IgA defciency is there but we have treated these people and they did
> get better. There is no excuse in not getting better .
>
> Ron
>
> On 2/8/08, BARBARA <hunny_bunn...@yahoo.com> wrote:
>
>
>
>
>
> > I was told that even though my symptoms are very real and very much the same
> > as many here in the CIDP group that the Neurologist in Chicago felt that I
> > might not have CIDP! He felt that my symptoms were more displayed to being
> > IgA deficient rather than IGg deficient. So here I am still without
> > treatment and my symptoms continue to progress. I have not been able to
> > find a lot about IgA deficiency. So I don't know any more than this. But
> > if it gives you something to research to help you then I hope my small input
> > will help.
> > Barbara
>
> > Barbara AKA hunny_bunny54
> > XOXOXOXOXO
>
> > http://groups.yahoo.com/group/Heart_Writings/group owner, a creative
> > writing groups
> > http://groups.yahoo.com/group/PassionsOfLife
>
> > ---------------------------------
> > Never miss a thing. Make Yahoo your homepage.
>
> --
> I.K
>
> >
> - Show quoted text -
Imran Khan
Feb 10, 2008, 5:14:01 AM2/10/08
to cid...@googlegroups.com
Barbara,
Please send your medical history to in...@cidpusa.org and you will get a answer.
Thanks
Ron
---------- Forwarded message ----------
From: "Imran Khan" <imran....@gmail.com>
To: cid...@googlegroups.com
Date: Fri, 8 Feb 2008 09:39:32 +0500
Subject: {cidpusa} Re: A question
There are many diseases which mimic CIDP, for all diseases there is a treatment.
People have been told that IgM DEICIENCY CANNOT GET BETTER BUT IT DOES.
IgA defciency is there but we have treated these people and they did
get better. There is no excuse in not getting better .
Ron
On 2/8/08, BARBARA <hunny_...@yahoo.com> wrote:
> I was told that even though my symptoms are very real and very much the same
> as many here in the CIDP group that the Neurologist in Chicago felt that I
> might not have CIDP! He felt that my symptoms were more displayed to being
> IgA deficient rather than IGg deficient. So here I am still without
> treatment and my symptoms continue to progress. I have not been able to
> find a lot about IgA deficiency. So I don't know any more than this. But
> if it gives you something to research to help you then I hope my small input
> will help.
> Barbara
>
>
>
>
> Barbara AKA hunny_bunny54
> XOXOXOXOXO
>
> http://groups.yahoo.com/group/Heart_Writings/ group owner, a creative
> writing groups
> http://groups.yahoo.com/group/PassionsOfLife
>
>
>
>
> ---------------------------------
> Never miss a thing. Make Yahoo your homepage.
> >
>
--
I.K
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I.K
rosena...@sbcglobal.net
Feb 11, 2008, 12:19:51 AM2/11/08
to CIDP
That doesn't make sense why the treatments are working. My husband
was mis-diagnosed with CIDP for 1 year and finally we went to a
specialist and found out that he has a different rare disease called
POEMS syndrome. It's similar to CIDP and doctors aren't really aware
of it. What are her symptoms?
On Feb 9, 10:54 pm, Faezeh <faez...@yahoo.com> wrote:
> Thank you very much for replying my question. Actually my mum who had
> been diognosed withCIDP3 years ago, has been getting weaker and
>
> > There are many diseases which mimicCIDP, for all diseases there is a treatment.
> > > might not haveCIDP! He felt that my symptoms were more displayed to being
was mis-diagnosed with CIDP for 1 year and finally we went to a
specialist and found out that he has a different rare disease called
POEMS syndrome. It's similar to CIDP and doctors aren't really aware
of it. What are her symptoms?
On Feb 9, 10:54 pm, Faezeh <faez...@yahoo.com> wrote:
> Thank you very much for replying my question. Actually my mum who had
> weaker.16 treatments with IVIG and using Prednisolone seem to be
> useless.
> I sent all of her documents to an Md in another city and he believes
> that the EMG doesn't match withCIDPand should be repeated. Although
> useless.
> I sent all of her documents to an Md in another city and he believes
> my mum's MD had done nerve biopsy and still he is sure that the
> disease isCIDP, we will take mum to visit this MD to see what will
> happen.
> Thank you again and wish soon recovery for all patients.
> Faezeh
>
> On Feb 10, 5:56 am, BARBARA <hunny_bunn...@yahoo.com> wrote:
>
>
>
> > Ron
> > So with what you are saying then what does a person do when they just keep running into brick walls and no one seems to want to take the risk? After four years going on five I am reaching the point of giving up! I didn't ask to be this sick and loost my ability to walk right and not hurt and all of the things that I have had come on me in the past four years. I am tired of the falling and everything else that is going along with what ever this is that no Doc can seem to put a diagnoise too! I have become known to my Neurologist as his Idiotpathtic patient!
> > Barb
>
> > Barbara AKA hunny_bunny54
> > XOXOXOXOXO
>
> > http://groups.yahoo.com/group/Heart_Writings/groupowner, a creative writing groups
> Thank you again and wish soon recovery for all patients.
> Faezeh
>
> On Feb 10, 5:56 am, BARBARA <hunny_bunn...@yahoo.com> wrote:
>
>
>
> > Ron
> > So with what you are saying then what does a person do when they just keep running into brick walls and no one seems to want to take the risk? After four years going on five I am reaching the point of giving up! I didn't ask to be this sick and loost my ability to walk right and not hurt and all of the things that I have had come on me in the past four years. I am tired of the falling and everything else that is going along with what ever this is that no Doc can seem to put a diagnoise too! I have become known to my Neurologist as his Idiotpathtic patient!
> > Barb
>
> > Barbara AKA hunny_bunny54
> > XOXOXOXOXO
>
> > http://groups.yahoo.com/group/PassionsOfLife
>
> > ---------------------------------
> > Looking for last minute shopping deals? Find them fast with Yahoo! Search.
>
> > [ Attached Message ]From:"Imran Khan" <imran.kha...@gmail.com>To:cidp...@googlegroups.comDate:Fri, 8 Feb 2008 09:39:32 +0500Local:Fri, Feb 8 2008 7:39 amSubject:{cidpusa} Re: A question
>
> > ---------------------------------
> > Looking for last minute shopping deals? Find them fast with Yahoo! Search.
>
>
> > There are many diseases which mimicCIDP, for all diseases there is a treatment.
> > People have been told that IgM DEICIENCY CANNOT GET BETTER BUT IT DOES.
>
> > IgA defciency is there but we have treated these people and they did
> > get better. There is no excuse in not getting better .
>
> > Ron
>
> > On 2/8/08, BARBARA <hunny_bunn...@yahoo.com> wrote:
>
> > > I was told that even though my symptoms are very real and very much the same
> > > as many here in theCIDPgroup that the Neurologist in Chicago felt that I
>
> > IgA defciency is there but we have treated these people and they did
> > get better. There is no excuse in not getting better .
>
> > Ron
>
> > On 2/8/08, BARBARA <hunny_bunn...@yahoo.com> wrote:
>
> > > I was told that even though my symptoms are very real and very much the same
> > > might not haveCIDP! He felt that my symptoms were more displayed to being
> > > IgA deficient rather than IGg deficient. So here I am still without
> > > treatment and my symptoms continue to progress. I have not been able to
> > > find a lot about IgA deficiency. So I don't know any more than this. But
> > > if it gives you something to research to help you then I hope my small input
> > > will help.
> > > Barbara
>
> > > Barbara AKA hunny_bunny54
> > > XOXOXOXOXO
>
> > > http://groups.yahoo.com/group/Heart_Writings/groupowner, a creative
> > > treatment and my symptoms continue to progress. I have not been able to
> > > find a lot about IgA deficiency. So I don't know any more than this. But
> > > if it gives you something to research to help you then I hope my small input
> > > will help.
> > > Barbara
>
> > > Barbara AKA hunny_bunny54
> > > XOXOXOXOXO
>
> > > writing groups
> > > http://groups.yahoo.com/group/PassionsOfLife
>
> > > ---------------------------------
> > > Never miss a thing. Make Yahoo your homepage.
>
> > --
> > I.K
>
> > - Show quoted text -- Hide quoted text -
> > > http://groups.yahoo.com/group/PassionsOfLife
>
> > > ---------------------------------
> > > Never miss a thing. Make Yahoo your homepage.
>
> > --
> > I.K
>
Amy Jens
Feb 29, 2008, 9:05:45 AM2/29/08
to cid...@googlegroups.com
OK so you dont know me but I joined this group a while ago b/c I too suffer from inflammation of the body, it started with my intestinal system, then to my colon and has attacked everything else but I have no autoimmune diseases so they say! I have had a huge amount of stress in my life, have had two babies, a hard relationship, and also way to many antibiotics but they did the blood test and ruled out autoimmune problems. So I have tried it all, but I found this product called Isangenix, www.isangenix.com It is the best stuff in the world, doctors, testimonials from people who too suffer from inflammation problems and mystery illness;. This stuff is awesome, it is a cleanse to clean out the toxins and then goes in with the vitamins and minerals to replenish the body. It is heaven it has helped my life tremendously and maybe you and everyone else in this group should look into something like this. Please contact me if you are interested, I just want to
help people who have suffered like I have.
Sincerely,
Amy
Faezeh <fae...@yahoo.com> wrote:
Sincerely,
Amy
Faezeh <fae...@yahoo.com> wrote:
Thank you very much for replying my question. Actually my mum who had
been diognosed with CIDP 3 years ago, has been getting weaker and
weaker.16 treatments with IVIG and using Prednisolone seem to be
useless.
I sent all of her documents to an Md in another city and he believes
that the EMG doesn't match with CIDP and should be repeated. Although
my mum's MD had done nerve biopsy and still he is sure that the
disease is CIDP, we will take mum to visit this MD to see what will
happen.
Thank you again and wish soon recovery for all patients.
Faezeh
On Feb 10, 5:56 am, BARBARA wrote:
> Ron
> So with what you are saying then what does a person do when they just keep running into brick walls and no one seems to want to take the risk? After four years going on five I am reaching the point of giving up! I didn't ask to be this sick and loost my ability to walk right and not hurt and all of the things that I have had come on me in the past four years. I am tired of the falling and everything else that is going along with what ever this is that no Doc can seem to put a diagnoise too! I have become known to my Neurologist as his Idiotpathtic patient!
> Barb
>
> Barbara AKA hunny_bunny54
> XOXOXOXOXO
>
> http://groups.yahoo.com/group/Heart_Writings/group owner, a creative writing groups
> http://groups.yahoo.com/group/PassionsOfLife
>
> ---------------------------------
> Looking for last minute shopping deals? Find them fast with Yahoo! Search.
>
>
>
> [ Attached Message ]From:"Imran Khan" To:cid...@googlegroups.comDate:Fri, 8 Feb 2008 09:39:32 +0500Local:Fri, Feb 8 2008 7:39 amSubject:{cidpusa} Re: A question
>
> There are many diseases which mimic CIDP, for all diseases there is a treatment.
> People have been told that IgM DEICIENCY CANNOT GET BETTER BUT IT DOES.
>
> IgA defciency is there but we have treated these people and they did
> get better. There is no excuse in not getting better .
>
> Ron
>
> On 2/8/08, BARBARA wrote:
>
>
>
>
>
> > I was told that even though my symptoms are very real and very much the same
> > as many here in the CIDP group that the Neurologist in Chicago felt that I
> > might not have CIDP! He felt that my symptoms were more displayed to being
> > IgA deficient rather than IGg deficient. So here I am still without
> > treatment and my symptoms continue to progress. I have not been able to
> > find a lot about IgA deficiency. So I don't know any more than this. But
> > if it gives you something to research to help you then I hope my small input
> > will help.
> > Barbara
>
> > Barbara AKA hunny_bunny54
> > XOXOXOXOXO
>
> > http://groups.yahoo.com/group/Heart_Writings/group owner, a creative
> > writing groups
> > http://groups.yahoo.com/group/PassionsOfLife
>
> > ---------------------------------
> > Never miss a thing. Make Yahoo your homepage.
>
> --
> I.K
>
> >
> - Show quoted text -
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