new to group

[Guest guest]

Thank you and LMay. It feels good sometimes just to say how you

feel. My family has heard me complain enough. And sometimes they take

it a bit personl. So I always have to watch how I say things with

them.

Jean-I wish there was a magic way to fix my tooth too. We do have

homeopath Drs here, but my insurance doesn't cover them, and we went

broke and even had to file banckruptcy just trying to find out what

was wrong. Because I had to go to Drs not on my insurance. That is

why I have to wait till January to find out which disease I have in

particular. We can change our insurance on October 22, but I don't

think it goes into effect untill January. Which is why I have to wait

until then. The Mayo Clinic (which is who found out what was wrong)

is on the new insurance. I would love to go to a homeopathic Dr,

because the only problem I had until I took my first pill was one

night I woke with a very high blood pressure. It had even gone down

to almost normal the next day, but they started me on 3 drugs

anyways, and everytime I had a " reaction " in the begining I didn't

make a connection with the medications. After a few times of these

problems I was already getting the anxiety label put on me. After I

started realizing that I was having reactions to the drugs we kept

trying me on new ones. (mostly for anxiety) and I kept having

reactions. I would have stopped trying to take them, but doctors kept

telling me I was going to have a heart attack if I didn't calm down.

(some even threatened me) And by the time I had been taking them a

while I was so sick I had lost 120 pounds from continuous vomitting

(about 40x a day or more of just a mouthful at a time) and was now

told I was anorexic! Trust me when I tell you there was a reason I

had 120 pounds to lose in the first place. After getting off all the

drugs I started to get better. Then I took the antibiotic. had a

numbness reaction, went to heart dr took benadryl. That night my ear

swelled shut, and half of a more private part of my body did too. So

told my regular Dr who couldn't see me for a couple days, and she

told me to keep taking the benadryl. I did this and took some asprin

for the pain in my ear. Ended up in ER same as I was before sick as a

dog. and the more things that got put into me the worse I got again.

I was pretreated for a dye, and then got the dye. also had gadolinium

for an mri. I was right back where I started from. Thats when I went

to the Mayo clinic. And they started finding simple things right

away. Because they looked. And they didn't give me any drugs either.

I was lacking in many vitamins including potasium, magnesium. and

later was diagnposed with secondary hyperparathyroidism, because I

had low levels of D and high parathyroid hormone. Then I thought

great that was it get some vitamin D and everything will be better.

Then I got the phone call about the other test. I really don't know

if they think I have the paraneoplastic syndrome, (the one with

cancer), or autoimmune dysautonomia, or there is also a

gastrintestinal one, that I don't remember the name of. I hope it is

not paraneoplastic syndrome, because I have all the symptoms of lung

cancer, and had a pulmonary function test that he said I had

restrictive lung disease. But I didn't find this out till I got the

paper work, because he said my test was fine?!? Why would he lie to

me? I've had many chest x-rays, and 2 chest cts. one without

contrast, one with to check for pulmonary embolism because sycope.

But I don't know if that is enough to rule out lung cancer. And I

don't know if other Drs have chosen not to tell me the truth about

tests they have done either. I just have so much mix up in my head

right now. Well it looks like I have done it again. turned this into

a run on session. (I won't call it whine anymore. thank you Jean). I

have to go call insurance companys and try to figure out the best

route to go with them. Thank you for the support.

Suzy

>

> oh wow Suzy

> I am so sorry you have had such a very tough time

> partly due to the docs not looking hard enough to find out what was

wrong

>

> I am glad that at least you now have perhaps the right diagnosis,

even though it is NOT what anyone would want to hear, for sure.

> I wish you could just take some time off now and get some good

rest, before going onto the next level.

> But of course you do need more info, probably.

>

> And as if you didn't have enough, you have that tooth too.

> I wish there were some magic way to get it taken care of!!

> I don't know if homeopathy could help, at least for a while, if you

had an expert homeopath nearby.

>

> And btw, I do NOT consider this whining -- or the stories from so

many others!

> I think you all have a right to be upset, and scared.

> And I sure wish it weren't so, for you or anyone else.

> Jean

>

>

> From: jskc4craigs

> Sent: Tuesday, October 14, 2008 12:58 AM

>

> Subject: New to group

>

>

> Hi I am new to this group. I have been " sick " for going on 4 1/2

> years. It is a long detailed story. (Going on page 6 of my letter

to

> my doctors.)I was told for the last 4 1/2 years that I had anxiety.

I

> always knew they were wrong. I even begged some doctors to check me

> for some rare stuff. I reacted to every medication in the book. But

> as I was always told (except for my constant hives) these are not

> allergic reactions. I was told I had a fear of medication. Which

> after getting sick on them for so long, and getting no help I must

> say I did. But I didn't when I first started them. I had never had

> these problems before in my life. Well I finally got to the right

> place. And got tested for some rare stuff. And guess what! I did

have

> something wrong. I tested positive for AChR Neuro.gangl.AB. Which

is

> a paraneoplastic antibody. I found out it is also related to other

> neurological autoimmune diseases too. I won't know the specific

> disease I have untill further testing is done. My hope is that it

is

> not paraneoplastic syndrome. But in the mean time i have been

through

> so much. Physically and emotionally. I don't have a lot of strength

> left. I know so many people have such bad story's, and such bad

times

> in life. I would like to go back to sitting around being criticized

> for not being able to get over my anxiety, and for this fake

disease

> I created in myself. The sad part was I even bought an anxiety

> program to try and " get over this " right before my positive test

came

> back. Some ways I'm happy. I have an answer to my pain and anguish.

> Other ways I am sad. There is no cure.But they said it can be

> treated. and if it is the paraneoplastic syndrome that is related

to

> small cell lung cancer. I am so scared. I don't trust Drs in my

town.

> they have hurt me so very bad. I have to wait for January to

> get " worked up " for this test. The fear isn't helping. I also have

a

> broken tooth that is causing terrific pain that I have not gone to

a

> dentist for because I have a leaky heart valve, and took

antibiotics

> to try and go to the dentist before. It ended in disaster with me

> sick bad for the next 5 months. Still not better from it. Now I

found

> a laser dentist who will do the work without novicane, but my heart

> Dr is out of town, and at his office they told me he said I should

> take the antibiotic. But the last time I talked to him he said I

> didn't have to. The tooth is so deep now I am afraid I will get an

> infection anyways.

>

> I am so sorry I went on whining like this. I was just planning to

> introduce myself. It turned into a run on whine. Anyways thats me.

>

> Suzy

>

[Guest guest]

WELCOME TO THE GROUP;;SUZY;; HEY;; I HAVE A DAUGHTER WITH THAT NAME ALSO;; SUZANNE;; THIS IS A VERY GOOD GROUP TO BE PART OF;; & YOU DONT HAVE TO FEEL YOU ARE WHINING;; YOU CAN VENT WHEN YOU FEEL THE NEED;; I PRAY THAT THE DRS GET TO THE BOTTOM OF ALL OF YOUR PROBLEMS;;YOU TAKE CARE OF YOURSELF

HEALING ((HUGS))

DORT FROM MICH.U.S.A.

From: jskc4craigs <jskc4craigs@...>Subject: New to group Date: Tuesday, October 14, 2008, 12:58 AM

Hi I am new to this group. I have been "sick" for going on 4 1/2 years. It is a long detailed story. (Going on page 6 of my letter to my doctors.)I was told for the last 4 1/2 years that I had anxiety. I always knew they were wrong. I even begged some doctors to check me for some rare stuff. I reacted to every medication in the book. But as I was always told (except for my constant hives) these are not allergic reactions. I was told I had a fear of medication. Which after getting sick on them for so long, and getting no help I must say I did. But I didn't when I first started them. I had never had these problems before in my life. Well I finally got to the right place. And got tested for some rare stuff. And guess what! I did have something wrong. I tested positive for AChR Neuro.gangl. AB. Which is a paraneoplastic antibody. I found out it is also related to other neurological autoimmune diseases

too. I won't know the specific disease I have untill further testing is done. My hope is that it is not paraneoplastic syndrome. But in the mean time i have been through so much. Physically and emotionally. I don't have a lot of strength left. I know so many people have such bad story's, and such bad times in life. I would like to go back to sitting around being criticized for not being able to get over my anxiety, and for this fake disease I created in myself. The sad part was I even bought an anxiety program to try and "get over this" right before my positive test came back. Some ways I'm happy. I have an answer to my pain and anguish. Other ways I am sad. There is no cure.But they said it can be treated. and if it is the paraneoplastic syndrome that is related to small cell lung cancer. I am so scared. I don't trust Drs in my town. they have hurt me so very bad. I have to wait for January to get

"worked up" for this test. The fear isn't helping. I also have a broken tooth that is causing terrific pain that I have not gone to a dentist for because I have a leaky heart valve, and took antibiotics to try and go to the dentist before. It ended in disaster with me sick bad for the next 5 months. Still not better from it. Now I found a laser dentist who will do the work without novicane, but my heart Dr is out of town, and at his office they told me he said I should take the antibiotic. But the last time I talked to him he said I didn't have to. The tooth is so deep now I am afraid I will get an infection anyways. I am so sorry I went on whining like this. I was just planning to introduce myself. It turned into a run on whine. Anyways thats me.Suzy

[Guest guest]

WELCOME TO THE GROUP;;SUZY;; HEY;; I HAVE A DAUGHTER WITH THAT NAME ALSO;; SUZANNE;; THIS IS A VERY GOOD GROUP TO BE PART OF;; & YOU DONT HAVE TO FEEL YOU ARE WHINING;; YOU CAN VENT WHEN YOU FEEL THE NEED;; I PRAY THAT THE DRS GET TO THE BOTTOM OF ALL OF YOUR PROBLEMS;;YOU TAKE CARE OF YOURSELF

HEALING ((HUGS))

DORT FROM MICH.U.S.A.

From: jskc4craigs <jskc4craigs@...>Subject: New to group Date: Tuesday, October 14, 2008, 12:58 AM

Hi I am new to this group. I have been "sick" for going on 4 1/2 years. It is a long detailed story. (Going on page 6 of my letter to my doctors.)I was told for the last 4 1/2 years that I had anxiety. I always knew they were wrong. I even begged some doctors to check me for some rare stuff. I reacted to every medication in the book. But as I was always told (except for my constant hives) these are not allergic reactions. I was told I had a fear of medication. Which after getting sick on them for so long, and getting no help I must say I did. But I didn't when I first started them. I had never had these problems before in my life. Well I finally got to the right place. And got tested for some rare stuff. And guess what! I did have something wrong. I tested positive for AChR Neuro.gangl. AB. Which is a paraneoplastic antibody. I found out it is also related to other neurological autoimmune diseases

too. I won't know the specific disease I have untill further testing is done. My hope is that it is not paraneoplastic syndrome. But in the mean time i have been through so much. Physically and emotionally. I don't have a lot of strength left. I know so many people have such bad story's, and such bad times in life. I would like to go back to sitting around being criticized for not being able to get over my anxiety, and for this fake disease I created in myself. The sad part was I even bought an anxiety program to try and "get over this" right before my positive test came back. Some ways I'm happy. I have an answer to my pain and anguish. Other ways I am sad. There is no cure.But they said it can be treated. and if it is the paraneoplastic syndrome that is related to small cell lung cancer. I am so scared. I don't trust Drs in my town. they have hurt me so very bad. I have to wait for January to get

"worked up" for this test. The fear isn't helping. I also have a broken tooth that is causing terrific pain that I have not gone to a dentist for because I have a leaky heart valve, and took antibiotics to try and go to the dentist before. It ended in disaster with me sick bad for the next 5 months. Still not better from it. Now I found a laser dentist who will do the work without novicane, but my heart Dr is out of town, and at his office they told me he said I should take the antibiotic. But the last time I talked to him he said I didn't have to. The tooth is so deep now I am afraid I will get an infection anyways. I am so sorry I went on whining like this. I was just planning to introduce myself. It turned into a run on whine. Anyways thats me.Suzy

[Guest guest]

Thank you so much for the prayers. And permission to whine is always

a good thing. Healing ((HUGS)) to you too.

Suzy

>

> From: jskc4craigs <jskc4craigs@...>

> Subject: New to group

>

> Date: Tuesday, October 14, 2008, 12:58 AM

>

>

>

>

>

>

> Hi I am new to this group. I have been " sick " for going on 4 1/2

> years. It is a long detailed story. (Going on page 6 of my letter

to

> my doctors.)I was told for the last 4 1/2 years that I had anxiety.

I

> always knew they were wrong. I even begged some doctors to check me

> for some rare stuff. I reacted to every medication in the book. But

> as I was always told (except for my constant hives) these are not

> allergic reactions. I was told I had a fear of medication. Which

> after getting sick on them for so long, and getting no help I must

> say I did. But I didn't when I first started them. I had never had

> these problems before in my life. Well I finally got to the right

> place. And got tested for some rare stuff. And guess what! I did

have

> something wrong. I tested positive for AChR Neuro.gangl. AB. Which

is

> a paraneoplastic antibody. I found out it is also related to other

> neurological autoimmune diseases too. I won't know the specific

> disease I have untill further testing is done. My hope is that it

is

> not paraneoplastic syndrome. But in the mean time i have been

through

> so much. Physically and emotionally. I don't have a lot of strength

> left. I know so many people have such bad story's, and such bad

times

> in life. I would like to go back to sitting around being criticized

> for not being able to get over my anxiety, and for this fake

disease

> I created in myself. The sad part was I even bought an anxiety

> program to try and " get over this " right before my positive test

came

> back. Some ways I'm happy. I have an answer to my pain and anguish.

> Other ways I am sad. There is no cure.But they said it can be

> treated. and if it is the paraneoplastic syndrome that is related

to

> small cell lung cancer. I am so scared. I don't trust Drs in my

town.

> they have hurt me so very bad. I have to wait for January to

> get " worked up " for this test. The fear isn't helping. I also have

a

> broken tooth that is causing terrific pain that I have not gone to

a

> dentist for because I have a leaky heart valve, and took

antibiotics

> to try and go to the dentist before. It ended in disaster with me

> sick bad for the next 5 months. Still not better from it. Now I

found

> a laser dentist who will do the work without novicane, but my heart

> Dr is out of town, and at his office they told me he said I should

> take the antibiotic. But the last time I talked to him he said I

> didn't have to. The tooth is so deep now I am afraid I will get an

> infection anyways.

>

> I am so sorry I went on whining like this. I was just planning to

> introduce myself. It turned into a run on whine. Anyways thats me.

>

> Suzy

>

[Guest guest]

Thank you so much for the prayers. And permission to whine is always

a good thing. Healing ((HUGS)) to you too.

Suzy

>

> From: jskc4craigs <jskc4craigs@...>

> Subject: New to group

>

> Date: Tuesday, October 14, 2008, 12:58 AM

>

>

>

>

>

>

> Hi I am new to this group. I have been " sick " for going on 4 1/2

> years. It is a long detailed story. (Going on page 6 of my letter

to

> my doctors.)I was told for the last 4 1/2 years that I had anxiety.

I

> always knew they were wrong. I even begged some doctors to check me

> for some rare stuff. I reacted to every medication in the book. But

> as I was always told (except for my constant hives) these are not

> allergic reactions. I was told I had a fear of medication. Which

> after getting sick on them for so long, and getting no help I must

> say I did. But I didn't when I first started them. I had never had

> these problems before in my life. Well I finally got to the right

> place. And got tested for some rare stuff. And guess what! I did

have

> something wrong. I tested positive for AChR Neuro.gangl. AB. Which

is

> a paraneoplastic antibody. I found out it is also related to other

> neurological autoimmune diseases too. I won't know the specific

> disease I have untill further testing is done. My hope is that it

is

> not paraneoplastic syndrome. But in the mean time i have been

through

> so much. Physically and emotionally. I don't have a lot of strength

> left. I know so many people have such bad story's, and such bad

times

> in life. I would like to go back to sitting around being criticized

> for not being able to get over my anxiety, and for this fake

disease

> I created in myself. The sad part was I even bought an anxiety

> program to try and " get over this " right before my positive test

came

> back. Some ways I'm happy. I have an answer to my pain and anguish.

> Other ways I am sad. There is no cure.But they said it can be

> treated. and if it is the paraneoplastic syndrome that is related

to

> small cell lung cancer. I am so scared. I don't trust Drs in my

town.

> they have hurt me so very bad. I have to wait for January to

> get " worked up " for this test. The fear isn't helping. I also have

a

> broken tooth that is causing terrific pain that I have not gone to

a

> dentist for because I have a leaky heart valve, and took

antibiotics

> to try and go to the dentist before. It ended in disaster with me

> sick bad for the next 5 months. Still not better from it. Now I

found

> a laser dentist who will do the work without novicane, but my heart

> Dr is out of town, and at his office they told me he said I should

> take the antibiotic. But the last time I talked to him he said I

> didn't have to. The tooth is so deep now I am afraid I will get an

> infection anyways.

>

> I am so sorry I went on whining like this. I was just planning to

> introduce myself. It turned into a run on whine. Anyways thats me.

>

> Suzy

>

[Guest guest]

Thank you so much for the prayers. And permission to whine is always

a good thing. Healing ((HUGS)) to you too.

Suzy

>

> From: jskc4craigs <jskc4craigs@...>

> Subject: New to group

>

> Date: Tuesday, October 14, 2008, 12:58 AM

>

>

>

>

>

>

> Hi I am new to this group. I have been " sick " for going on 4 1/2

> years. It is a long detailed story. (Going on page 6 of my letter

to

> my doctors.)I was told for the last 4 1/2 years that I had anxiety.

I

> always knew they were wrong. I even begged some doctors to check me

> for some rare stuff. I reacted to every medication in the book. But

> as I was always told (except for my constant hives) these are not

> allergic reactions. I was told I had a fear of medication. Which

> after getting sick on them for so long, and getting no help I must

> say I did. But I didn't when I first started them. I had never had

> these problems before in my life. Well I finally got to the right

> place. And got tested for some rare stuff. And guess what! I did

have

> something wrong. I tested positive for AChR Neuro.gangl. AB. Which

is

> a paraneoplastic antibody. I found out it is also related to other

> neurological autoimmune diseases too. I won't know the specific

> disease I have untill further testing is done. My hope is that it

is

> not paraneoplastic syndrome. But in the mean time i have been

through

> so much. Physically and emotionally. I don't have a lot of strength

> left. I know so many people have such bad story's, and such bad

times

> in life. I would like to go back to sitting around being criticized

> for not being able to get over my anxiety, and for this fake

disease

> I created in myself. The sad part was I even bought an anxiety

> program to try and " get over this " right before my positive test

came

> back. Some ways I'm happy. I have an answer to my pain and anguish.

> Other ways I am sad. There is no cure.But they said it can be

> treated. and if it is the paraneoplastic syndrome that is related

to

> small cell lung cancer. I am so scared. I don't trust Drs in my

town.

> they have hurt me so very bad. I have to wait for January to

> get " worked up " for this test. The fear isn't helping. I also have

a

> broken tooth that is causing terrific pain that I have not gone to

a

> dentist for because I have a leaky heart valve, and took

antibiotics

> to try and go to the dentist before. It ended in disaster with me

> sick bad for the next 5 months. Still not better from it. Now I

found

> a laser dentist who will do the work without novicane, but my heart

> Dr is out of town, and at his office they told me he said I should

> take the antibiotic. But the last time I talked to him he said I

> didn't have to. The tooth is so deep now I am afraid I will get an

> infection anyways.

>

> I am so sorry I went on whining like this. I was just planning to

> introduce myself. It turned into a run on whine. Anyways thats me.

>

> Suzy

>

[Guest guest]

YOU ARE VERY WELCOME SUZY & THANKS FOR YOUR WISHES TO ME ALSO

HUGS

DORT

From: jskc4craigs <jskc4craigs@...>Subject: Re: New to group Date: Friday, October 17, 2008, 12:51 AM

Thank you so much for the prayers. And permission to whine is always a good thing. Healing ((HUGS)) to you too.Suzy> > From: jskc4craigs <jskc4craigs@ ...>> Subject: New to group> @grou ps.com> Date: Tuesday, October 14, 2008, 12:58 AM> > > > > > > Hi I am new to this group. I have been "sick" for going on 4 1/2 > years. It is a long detailed story. (Going on page 6 of my letter to > my doctors.)I was told for the last 4 1/2 years that I had anxiety. I > always knew they were wrong. I even begged some doctors to check me > for some rare stuff. I reacted to every medication in the book. But > as I was always told (except for my constant hives) these are not > allergic reactions. I was told I had a fear of medication. Which > after getting sick on them for so long, and getting no help I must > say I did. But I didn't when I first started them. I had never had > these problems before in my life. Well I finally got to the right > place. And got tested for some rare stuff.

And guess what! I did have > something wrong. I tested positive for AChR Neuro.gangl. AB. Which is > a paraneoplastic antibody. I found out it is also related to other > neurological autoimmune diseases too. I won't know the specific > disease I have untill further testing is done. My hope is that it is > not paraneoplastic syndrome. But in the mean time i have been through > so much. Physically and emotionally. I don't have a lot of strength > left. I know so many people have such bad story's, and such bad times > in life. I would like to go back to sitting around being criticized > for not being able to get over my anxiety, and for this fake disease > I created in myself. The sad part was I even bought an anxiety > program to try and "get over this" right before my positive test came > back. Some ways I'm happy. I have an answer to my pain

and anguish. > Other ways I am sad. There is no cure.But they said it can be > treated. and if it is the paraneoplastic syndrome that is related to > small cell lung cancer. I am so scared. I don't trust Drs in my town. > they have hurt me so very bad. I have to wait for January to > get "worked up" for this test. The fear isn't helping. I also have a > broken tooth that is causing terrific pain that I have not gone to a > dentist for because I have a leaky heart valve, and took antibiotics > to try and go to the dentist before. It ended in disaster with me > sick bad for the next 5 months. Still not better from it. Now I found > a laser dentist who will do the work without novicane, but my heart > Dr is out of town, and at his office they told me he said I should > take the antibiotic. But the last time I talked to him he said I > didn't

have to. The tooth is so deep now I am afraid I will get an > infection anyways. > > I am so sorry I went on whining like this. I was just planning to > introduce myself. It turned into a run on whine. Anyways thats me.> > Suzy>

[Guest guest]

YOU ARE VERY WELCOME SUZY & THANKS FOR YOUR WISHES TO ME ALSO

HUGS

DORT

From: jskc4craigs <jskc4craigs@...>Subject: Re: New to group Date: Friday, October 17, 2008, 12:51 AM

Thank you so much for the prayers. And permission to whine is always a good thing. Healing ((HUGS)) to you too.Suzy> > From: jskc4craigs <jskc4craigs@ ...>> Subject: New to group> @grou ps.com> Date: Tuesday, October 14, 2008, 12:58 AM> > > > > > > Hi I am new to this group. I have been "sick" for going on 4 1/2 > years. It is a long detailed story. (Going on page 6 of my letter to > my doctors.)I was told for the last 4 1/2 years that I had anxiety. I > always knew they were wrong. I even begged some doctors to check me > for some rare stuff. I reacted to every medication in the book. But > as I was always told (except for my constant hives) these are not > allergic reactions. I was told I had a fear of medication. Which > after getting sick on them for so long, and getting no help I must > say I did. But I didn't when I first started them. I had never had > these problems before in my life. Well I finally got to the right > place. And got tested for some rare stuff.

And guess what! I did have > something wrong. I tested positive for AChR Neuro.gangl. AB. Which is > a paraneoplastic antibody. I found out it is also related to other > neurological autoimmune diseases too. I won't know the specific > disease I have untill further testing is done. My hope is that it is > not paraneoplastic syndrome. But in the mean time i have been through > so much. Physically and emotionally. I don't have a lot of strength > left. I know so many people have such bad story's, and such bad times > in life. I would like to go back to sitting around being criticized > for not being able to get over my anxiety, and for this fake disease > I created in myself. The sad part was I even bought an anxiety > program to try and "get over this" right before my positive test came > back. Some ways I'm happy. I have an answer to my pain

and anguish. > Other ways I am sad. There is no cure.But they said it can be > treated. and if it is the paraneoplastic syndrome that is related to > small cell lung cancer. I am so scared. I don't trust Drs in my town. > they have hurt me so very bad. I have to wait for January to > get "worked up" for this test. The fear isn't helping. I also have a > broken tooth that is causing terrific pain that I have not gone to a > dentist for because I have a leaky heart valve, and took antibiotics > to try and go to the dentist before. It ended in disaster with me > sick bad for the next 5 months. Still not better from it. Now I found > a laser dentist who will do the work without novicane, but my heart > Dr is out of town, and at his office they told me he said I should > take the antibiotic. But the last time I talked to him he said I > didn't

have to. The tooth is so deep now I am afraid I will get an > infection anyways. > > I am so sorry I went on whining like this. I was just planning to > introduce myself. It turned into a run on whine. Anyways thats me.> > Suzy>

[Guest guest]

Welcome Phyllis, I have a son Lucas who is 12 going on 13. He is CVID and does

his infusions weekly at home on Sub Q. It is wonderful not to have to go to the

Dr. regularly. It is a much more normal life for us. My son started IVIg when he

was 3 and switched to sup Q when he was 10. He is giving me trouble now

believing that he does not need it because he cannot remember being so sick.

Everyone is very nice here ,I joined when he was 4 and it has been a great

support.

BARBIE

________________________________

From: Phyllis Boushel <phyllisboushel@...>

Sent: Tuesday, October 28, 2008 10:36:43 AM

Subject: New to group

Hello everyone - I am new to this group, but not new to Immune Deficiency. My

son Liam is 12 years old - tomorrow (!)- and we have been officially diagnosed

with CVID since the age of 7. Liam has been receiving infusions in hospital -

every four weeks (used to be three weeks)... so I feel that we have become pros

at certain parts of this process - and still so very alone in many other ways.

We live in Canada, New Brunswick - so I realize a lot of the health care is

different, although the results are all the same. Like I said - we've learned

a lot - but realize that there is so much more -and at times don't feel

connected to anyone but a Dr. / Nurse.... So I really, really look forward to

being part of this group - nice to read a lot of the same concerns. Liam is

taking gammagard 10% - now 50 grams every four weeks. We have had a lot of post

infusion side effects - I also was wondering if anyone in this group has an

adrenal insufficiency? ?

Liam does - taking cortef daily. Liam was always very, very sick prior to his

diagnosis- pneumonia, chronic ear infections, you name it - he got it.

Phyllis

____________ _________ _________ _________ _________ _________ _

Instant Messaging, free SMS, sharing photos and more... Try the new

Canada Messenger at http://ca.beta. messenger. ..com/

[Guest guest]

Hi Phyllis ! Nice to see you here and glad you found the site. The parents

on this group are great - no matter what you are going through someone else

has probably dealt with a similar situation and will offer their input or

advice. I also felt very alone with " all this " before I found this group.

As I mentionned on facebook, I live outside of Toronto and our experience is

different than US patients who have to deal with insurance issues... but

health wise we go through the same issues.

There are some teenagers with CVID who are emailing or facebook-ing each

other for support as well. You might want to check that out if Liam is

interested.

Kim, mom to (age 6 - Hyper IgE / Job Syndrome)

also mom to (age 11 - Tourette's Syndrome) and (age 8 -

" normal " lol)

[Guest guest]

Hi Phyllis,

Welcome to the group!

My son Conner is 14 and has dealt with secondary adrenal insufficiency a couple

of times, caused by steroid usage, once from an inhaler and again after his bone

marrow transplant. Which type of adrenal insufficiency (primary or secondary)

does Liam have?

Conner was on Cortef for quite some time which required us to increase his dose

every time he got sick or injured. At one point we had to carry injectable

hydrocortisone with us wherever we went and also had to leave it in the nurse's

office at school. In addition, he had to wear a medical alert bracelet warning

of an adrenal crisis.

How is Liam's health now? Conner was also diagnosed with CVID, but later we

realized that he actually had NEMO. It was difficult deciding to transplant him

as he was doing so well with treatment. You've got to love IVIG, it makes such a

difference!

Take care,

(NEMO carrier)

Mom to Hayden (14-unknown PID)

Evan (14-unknown PID)

Conner (14-NEMO; transplanted 8/17/07)

Kelsey (12-unknown PID and NEMO carrier)

Wife to (unknown PID)

www.caringbridge.org/visit/smithkids

[Guest guest]

i don't think you are whining. that is what we are all here for. i am glad that you are getting the answers you are looking for. even if they aren't the answers you want they are atleast answers and a point for you to go on from. keep us posted.

evelyncure cystic fibrosis

From: jskc4craigs <jskc4craigs@...>Subject: New to group Date: Tuesday, October 14, 2008, 12:58 AM

Hi I am new to this group. I have been "sick" for going on 4 1/2 years. It is a long detailed story. (Going on page 6 of my letter to my doctors.)I was told for the last 4 1/2 years that I had anxiety. I always knew they were wrong. I even begged some doctors to check me for some rare stuff. I reacted to every medication in the book. But as I was always told (except for my constant hives) these are not allergic reactions. I was told I had a fear of medication. Which after getting sick on them for so long, and getting no help I must say I did. But I didn't when I first started them. I had never had these problems before in my life. Well I finally got to the right place. And got tested for some rare stuff. And guess what! I did have something wrong. I tested positive for AChR Neuro.gangl. AB. Which is a paraneoplastic antibody. I found out it is also related to other neurological autoimmune diseases

too. I won't know the specific disease I have untill further testing is done. My hope is that it is not paraneoplastic syndrome. But in the mean time i have been through so much. Physically and emotionally. I don't have a lot of strength left. I know so many people have such bad story's, and such bad times in life. I would like to go back to sitting around being criticized for not being able to get over my anxiety, and for this fake disease I created in myself. The sad part was I even bought an anxiety program to try and "get over this" right before my positive test came back. Some ways I'm happy. I have an answer to my pain and anguish. Other ways I am sad. There is no cure.But they said it can be treated. and if it is the paraneoplastic syndrome that is related to small cell lung cancer. I am so scared. I don't trust Drs in my town. they have hurt me so very bad. I have to wait for January to get

"worked up" for this test. The fear isn't helping. I also have a broken tooth that is causing terrific pain that I have not gone to a dentist for because I have a leaky heart valve, and took antibiotics to try and go to the dentist before. It ended in disaster with me sick bad for the next 5 months. Still not better from it. Now I found a laser dentist who will do the work without novicane, but my heart Dr is out of town, and at his office they told me he said I should take the antibiotic. But the last time I talked to him he said I didn't have to. The tooth is so deep now I am afraid I will get an infection anyways. I am so sorry I went on whining like this. I was just planning to introduce myself. It turned into a run on whine. Anyways thats me.Suzy

[Guest guest]

Patty you will not experience any negatives

from this group.

Welcome to the Group.

Jo Lynne

new to group

Hello: I'm Patty from missouri.. I am happy I found this group, I am with other medical groups but I have so many medical problems this group sounds helpful. I have had problems since birth, kidney, bladder surgery before 2nd grade and it didn't stop.kidney problems through out childhood still have but haven't had episode since 92..since 78 I got I.T.P 3 bone marrows, platelettes given to me in 92.. hysterectomy, gall bladder removed. liver biopsy. automunie diease. waiting to talk to dr...should I go on... tired of people acting like I make me being sick up like it's no big deal...

[Guest guest]

Patty you will not experience any negatives

from this group.

Welcome to the Group.

Jo Lynne

new to group

Hello: I'm Patty from missouri.. I am happy I found this group, I am with other medical groups but I have so many medical problems this group sounds helpful. I have had problems since birth, kidney, bladder surgery before 2nd grade and it didn't stop.kidney problems through out childhood still have but haven't had episode since 92..since 78 I got I.T.P 3 bone marrows, platelettes given to me in 92.. hysterectomy, gall bladder removed. liver biopsy. automunie diease. waiting to talk to dr...should I go on... tired of people acting like I make me being sick up like it's no big deal...

[Guest guest]

Patty you will not experience any negatives

from this group.

Welcome to the Group.

Jo Lynne

new to group

Hello: I'm Patty from missouri.. I am happy I found this group, I am with other medical groups but I have so many medical problems this group sounds helpful. I have had problems since birth, kidney, bladder surgery before 2nd grade and it didn't stop.kidney problems through out childhood still have but haven't had episode since 92..since 78 I got I.T.P 3 bone marrows, platelettes given to me in 92.. hysterectomy, gall bladder removed. liver biopsy. automunie diease. waiting to talk to dr...should I go on... tired of people acting like I make me being sick up like it's no big deal...

[Guest guest]

welcome patty

[Guest guest]

Hi Patty,

Wow! You have been through a lot! Welcome to the group. I'm new to the group myself, and I just wanted to let you know that I've experienced a wealth of emotional support since I just recently joined. It's the pits being sick, and when nobody personally understands what you're going through, it makes it that much harder. In addition to the physical ailments of the body, we go through a lot of psychological anguish, and it can get pretty lonely as the world keeps turning and people keep on living their lives, and we feel left behind/lonley/guilty/etc... Just wanted to let you know that you're not alone, and I'm glad you found us!

From: patty_welch2000 <patty_welch2000@...>Subject: new to group Date: Tuesday, December 23, 2008, 4:59 PM

Hello: I'm Patty from missouri.. I am happy I found this group, I am with other medical groups but I have so many medical problems this group sounds helpful. I have had problems since birth, kidney, bladder surgery before 2nd grade and it didn't stop.kidney problems through out childhood still have but haven't had episode since 92..since 78 I got I.T.P 3 bone marrows, platelettes given to me in 92.. hysterectomy, gall bladder removed. liver biopsy. automunie diease. waiting to talk to dr...should I go on... tired of people acting like I make me being sick up like it's no big deal...

[Guest guest]

Hi Patty,

Wow! You have been through a lot! Welcome to the group. I'm new to the group myself, and I just wanted to let you know that I've experienced a wealth of emotional support since I just recently joined. It's the pits being sick, and when nobody personally understands what you're going through, it makes it that much harder. In addition to the physical ailments of the body, we go through a lot of psychological anguish, and it can get pretty lonely as the world keeps turning and people keep on living their lives, and we feel left behind/lonley/guilty/etc... Just wanted to let you know that you're not alone, and I'm glad you found us!

From: patty_welch2000 <patty_welch2000@...>Subject: new to group Date: Tuesday, December 23, 2008, 4:59 PM

Hello: I'm Patty from missouri.. I am happy I found this group, I am with other medical groups but I have so many medical problems this group sounds helpful. I have had problems since birth, kidney, bladder surgery before 2nd grade and it didn't stop.kidney problems through out childhood still have but haven't had episode since 92..since 78 I got I.T.P 3 bone marrows, platelettes given to me in 92.. hysterectomy, gall bladder removed. liver biopsy. automunie diease. waiting to talk to dr...should I go on... tired of people acting like I make me being sick up like it's no big deal...

[Guest guest]

Hi Patty,

Wow! You have been through a lot! Welcome to the group. I'm new to the group myself, and I just wanted to let you know that I've experienced a wealth of emotional support since I just recently joined. It's the pits being sick, and when nobody personally understands what you're going through, it makes it that much harder. In addition to the physical ailments of the body, we go through a lot of psychological anguish, and it can get pretty lonely as the world keeps turning and people keep on living their lives, and we feel left behind/lonley/guilty/etc... Just wanted to let you know that you're not alone, and I'm glad you found us!

From: patty_welch2000 <patty_welch2000@...>Subject: new to group Date: Tuesday, December 23, 2008, 4:59 PM

Hello: I'm Patty from missouri.. I am happy I found this group, I am with other medical groups but I have so many medical problems this group sounds helpful. I have had problems since birth, kidney, bladder surgery before 2nd grade and it didn't stop.kidney problems through out childhood still have but haven't had episode since 92..since 78 I got I.T.P 3 bone marrows, platelettes given to me in 92.. hysterectomy, gall bladder removed. liver biopsy. automunie diease. waiting to talk to dr...should I go on... tired of people acting like I make me being sick up like it's no big deal...

[Guest guest]

Welcome to the group Patty.

I would have written earlier but I changed providers for

computer and was down. I had a Liver Transplant

May 15th 1995 at Baylor/Dallas so I know all about

Liver Biopsy - I have at least 30 or more. I

would be very thankful if you asked questions.

{{{{{{CARING HUGS}}}}}}

Jo Lynne

new to group Date: Tuesday, December 23, 2008, 4:59 PM

Hello: I'm Patty from missouri.. I am happy I found this group, I am with other medical groups but I have so many medical problems this group sounds helpful. I have had problems since birth, kidney, bladder surgery before 2nd grade and it didn't stop.kidney problems through out childhood still have but haven't had episode since 92..since 78 I got I.T.P 3 bone marrows, platelettes given to me in 92.. hysterectomy, gall bladder removed. liver biopsy. automunie diease. waiting to talk to dr...should I go on... tired of people acting like I make me being sick up like it's no big deal...

[Guest guest]

Welcome to the group Patty.

I would have written earlier but I changed providers for

computer and was down. I had a Liver Transplant

May 15th 1995 at Baylor/Dallas so I know all about

Liver Biopsy - I have at least 30 or more. I

would be very thankful if you asked questions.

{{{{{{CARING HUGS}}}}}}

Jo Lynne

new to group Date: Tuesday, December 23, 2008, 4:59 PM

Hello: I'm Patty from missouri.. I am happy I found this group, I am with other medical groups but I have so many medical problems this group sounds helpful. I have had problems since birth, kidney, bladder surgery before 2nd grade and it didn't stop.kidney problems through out childhood still have but haven't had episode since 92..since 78 I got I.T.P 3 bone marrows, platelettes given to me in 92.. hysterectomy, gall bladder removed. liver biopsy. automunie diease. waiting to talk to dr...should I go on... tired of people acting like I make me being sick up like it's no big deal...

[Guest guest]

Welcome to the group Patty.

I would have written earlier but I changed providers for

computer and was down. I had a Liver Transplant

May 15th 1995 at Baylor/Dallas so I know all about

Liver Biopsy - I have at least 30 or more. I

would be very thankful if you asked questions.

{{{{{{CARING HUGS}}}}}}

Jo Lynne

new to group Date: Tuesday, December 23, 2008, 4:59 PM

Hello: I'm Patty from missouri.. I am happy I found this group, I am with other medical groups but I have so many medical problems this group sounds helpful. I have had problems since birth, kidney, bladder surgery before 2nd grade and it didn't stop.kidney problems through out childhood still have but haven't had episode since 92..since 78 I got I.T.P 3 bone marrows, platelettes given to me in 92.. hysterectomy, gall bladder removed. liver biopsy. automunie diease. waiting to talk to dr...should I go on... tired of people acting like I make me being sick up like it's no big deal...

[Guest guest]

Thanks for being there

From: patty_welch2000 <patty_welch2000>Subject: new to group@grou ps.comDate: Tuesday, December 23, 2008, 4:59 PM

Hello: I'm Patty from missouri.. I am happy I found this group, I am with other medical groups but I have so many medical problems this group sounds helpful. I have had problems since birth, kidney, bladder surgery before 2nd grade and it didn't stop.kidney problems through out childhood still have but haven't had episode since 92..since 78 I got I.T.P 3 bone marrows, platelettes given to me in 92.. hysterectomy, gall bladder removed. liver biopsy. automunie diease. waiting to talk to dr...should I go on... tired of people acting like I make me being sick up like it's no big deal...

[Guest guest]

;

Your story sounds similar to mine. My daughter had these

fevers for about three years (possibly longer) and I just learned to

accept that she had them. She would just suddenly get lethargic, and

that would be when I would discover the high temperature. Children's

Motrin completely resolved it, and she would play as if nothing was

the matter. After a few days of that, the fever would go away and

then she would get the mouth sores. We only used Motrin because of a

family history of hemochromotosis, which is damaging to the liver -

that makes us leary of using Tylenol.

We got a diagnosis in October 2007 when I went to the pediatrician's

office for her annual physical and got a new doctor (there are about

seven in the office) who was fresh out of medical school and had

learned about during her residency. That was when I found this

group. I've not pursued further testing for other periodic fever

syndromes (cyclic neutropenia, HIDS, FMA, etc.) because not long

after the diagnosis I realized she was outgrowing it. She had one

fever cycle since then (in March 2008)and nothing since then. There

have been a few times I was sure they were starting, but nothing has

happened.

If your daughter has not been tested for the genetic disorders, it

would be a good idea to do so just to be sure. I know I would have

done that if had continued with the fever cycles.

Good luck to you!

Michele Mulidor

(16), Abigail (13) and (6 - outgrown ?)

[Guest guest]

-hey michelle,

my daughter just recently grew out of her , she's eleven and

she's been fever free for one year. she had her fevers since infancy

and was diagnosed when she was seven (after she started school and she

missed so many days). we opted not to have surgery or the steroids

and just dealt w/ the fevers every month. we're hoping she won't get

them again during puberty. good luck to you and ora. this group has

been a lifesaver.