new to group

October 14, 2008

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

>

October 15, 2008

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

October 15, 2008

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

October 16, 2008

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