First and foremost: I have been going thru everyones threads as I did not know to scroll down and see how to post. Dag nabit. I feel so stupid but the stubity was in not asking. I learn something every dayl

Now I will try and shorten this if I can. My husband Bill was wrongly diagnosed with cidp back in Jan. 2008. Although the doc felt for sure was cidp.Previous neuros said periphial As most stories go the first 2 years were stretched with nothing new . After changing both family docs and neuros we settled on #3 neuro. Assistant said he was a genius.Ha!
1. Prednasone and Imuran (brings down immune sys) I questioned this as we were going to Disney with grandchildren. [B]Doc said don’t worry he will be fine. [/B] Wrong. He could hardly walk due to weakness.
2. I both doc and parctioner stated they he thought he was improvement. I did not agree. But of course they did not put into their notes. [B][/B]One week after returning he had sepsis[B][/B] Almost died
3. Weaning off pred. and stopped immuran- onto ivig. 6 weeks apart and no change. 2nd ivig-no change. Asked practicioner to ask dr. for closer. Look outside the box. Answer No. Reason : Not his protocal.
4. Now of pp. with no change either. Finally husband agreed to get 2nd opinion-Clev Clinic.
5. Neuro refused initally to give me emg and send bioposy..Said trust me 2nd opinion will not need them. I insisted as he gave only written report and not full emg.with scale. I only knew not complete as I compared to first docs emg.
6. spinal test – no protein 7. surel nerve bioposy not showing onion bulb.
never saying what that meant as I thought not showing meant good.

After 10 months with neuro we have correct dx worse than the first. Why I am telling you this is do not stop at first opinion no matter what. The patient sometimes feels a loyalty as my husband felt and (he was a genius) but any good neuro will not only suggest it but will encourage it, which ours did not even though he knew an uncle died of this new dx. He never gave us info on what he tested for and never told us he tested for this when he did nerve bioposy. I found out about the onion bulb and questioned him about it but he said not everyone has onion bulb. Test came back nothing but he needed to slice it and dice it according to Clev Clinic which he supposedly is doing now but worst of all he said ” IT HAPPENS” and He does not do dna tests (which proved it)”BECAUSE MEDICARE PAYS NOT PAY FOR IT” He never shared that as we are the ones to decide this.

Although I am thankful we found the truth I am oh so bitter with this docs attitude and incompetance. When we had questions we always had to go thru his nurse. She most always stopped us from asking him. ex: Sores in mouth do baking soda. He had sepsis and hospital treated it with a medicine not baking soda, This is just a few items.

I am suggesting again do not let your spouse put off 2nd opinion just because doc is either good or bad and nothing is improving. Do it please.

Bill has Familia amyloidosis the inherited type as there are others . His is extremely rare and his mutation is also rare. There are lots of different mutations. Other Amyloidosis can be treated other ways (trials,stem cell transplants, ) His may not be treatable except with possibly a liver transplant which is also not completely safe. I have been reading about transplants and sometimes the patient may live longer without transplant if done too early but waiting may also be bad. Trials are not always successful as you may get the placebo not the real deal. But real deals may not even do it.

The former doc said not treatable and no liver transplant possible with this disease.
We have not signed up with either Mayo or Boston U yet as we are working with a researcher who was willing to give us the real deal and did a stomach bioposy and more blood tests . We want to see where this will go first . He has asked for info about uncle which we are working on and he knows another researcher in Indianapolis who may have had more subjects like Bill. He himself thought he only had one that rare. He explained the best he could about the mutation and why it was rare. He will study the blood tests under a microscope himself. We are open for more researchers in case he cannot help us but so far only problem is his age, however people voted for McCain didn’t they? I needed some humor.
My husband had every right to be mad but never showed it. Later I did cry in from of him and said I did not want him to die and he said he was not going to and he was ok. I cannot figure out why he was not mad or upset. He says not use getting yourself upset-nothing you can do about it. I want to scream . I cry every day but again not in front of him.
I had a sister who was misdiagnosed at l7 years and died
A mother who needed surgery and two doctors disagreed if surgery came first or stopping blood thinner and then surgery. We were made to decide even we are not doctors. It was the wrong thing and she died.

I will not let this happen again as I am a fighter and very proactive.I have made Bill do things my children disagreed with and made decisions they disagreed with but I am here and someday they will understand you do everything you can to help your partner. They are young and will go thru a crisis some day and remember to tell their children as I have told them to not judge them and just trust them and support them all they can.
I thank everyone on this site for their undying support , their help and kindness with all my heart. I could not go thru this alone

First and foremost: I have been going thru everyones threads as I did not know to scroll down and see how to post. Dag nabit. I feel so stupid but the stubity was in not asking. I learn something every dayl

Now I will try and shorten this if I can. My husband Bill was wrongly diagnosed with cidp back in Jan. 2008. Although the doc felt for sure was cidp.Previous neuros said periphial As most stories go the first 2 years were stretched with nothing new . After changing both family docs and neuros we settled on #3 neuro. Assistant said he was a genius.Ha!
1. Prednasone and Imuran (brings down immune sys) I questioned this as we were going to Disney with grandchildren. [B]Doc said don’t worry he will be fine. [/B] Wrong. He could hardly walk due to weakness.
2. I both doc and parctioner stated they he thought he was improvement. I did not agree. But of course they did not put into their notes. [B][/B]One week after returning he had sepsis[B][/B] Almost died
3. Weaning off pred. and stopped immuran- onto ivig. 6 weeks apart and no change. 2nd ivig-no change. Asked practicioner to ask dr. for closer. Look outside the box. Answer No. Reason : Not his protocal.
4. Now of pp. with no change either. Finally husband agreed to get 2nd opinion-Clev Clinic.
5. Neuro refused initally to give me emg and send bioposy..Said trust me 2nd opinion will not need them. I insisted as he gave only written report and not full emg.with scale. I only knew not complete as I compared to first docs emg.
6. spinal test – no protein 7. surel nerve bioposy not showing onion bulb.
never saying what that meant as I thought not showing meant good.

After 10 months with neuro we have correct dx worse than the first. Why I am telling you this is do not stop at first opinion no matter what. The patient sometimes feels a loyalty as my husband felt and (he was a genius) but any good neuro will not only suggest it but will encourage it, which ours did not even though he knew an uncle died of this new dx. He never gave us info on what he tested for and never told us he tested for this when he did nerve bioposy. I found out about the onion bulb and questioned him about it but he said not everyone has onion bulb. Test came back nothing but he needed to slice it and dice it according to Clev Clinic which he supposedly is doing now but worst of all he said ” IT HAPPENS” and He does not do dna tests (which proved it)”BECAUSE MEDICARE PAYS NOT PAY FOR IT” He never shared that as we are the ones to decide this.

Although I am thankful we found the truth I am oh so bitter with this docs attitude and incompetance. When we had questions we always had to go thru his nurse. She most always stopped us from asking him. ex: Sores in mouth do baking soda. He had sepsis and hospital treated it with a medicine not baking soda, This is just a few items.

I am suggesting again do not let your spouse put off 2nd opinion just because doc is either good or bad and nothing is improving. Do it please.

Bill has Familia amyloidosis the inherited type as there are others . His is extremely rare and his mutation is also rare. There are lots of different mutations. Other Amyloidosis can be treated other ways (trials,stem cell transplants, ) His may not be treatable except with possibly a liver transplant which is also not completely safe. I have been reading about transplants and sometimes the patient may live longer without transplant if done too early but waiting may also be bad. Trials are not always successful as you may get the placebo not the real deal. But real deals may not even do it.

The former doc said not treatable and no liver transplant possible with this disease.
We have not signed up with either Mayo or Boston U yet as we are working with a researcher who was willing to give us the real deal and did a stomach bioposy and more blood tests . We want to see where this will go first . He has asked for info about uncle which we are working on and he knows another researcher in Indianapolis who may have had more subjects like Bill. He himself thought he only had one that rare. He explained the best he could about the mutation and why it was rare. He will study the blood tests under a microscope himself. We are open for more researchers in case he cannot help us but so far only problem is his age, however people voted for McCain didn’t they? I needed some humor.
My husband had every right to be mad but never showed it. Later I did cry in from of him and said I did not want him to die and he said he was not going to and he was ok. I cannot figure out why he was not mad or upset. He says not use getting yourself upset-nothing you can do about it. I want to scream . I cry every day but again not in front of him.
I had a sister who was misdiagnosed at l7 years and died
A mother who needed surgery and two doctors disagreed if surgery came first or stopping blood thinner and then surgery. We were made to decide even we are not doctors. It was the wrong thing and she died.

I will not let this happen again as I am a fighter and very proactive.I have made Bill do things my children disagreed with and made decisions they disagreed with but I am here and someday they will understand you do everything you can to help your partner. They are young and will go thru a crisis some day and remember to tell their children as I have told them to not judge them and just trust them and support them all they can.
I thank everyone on this site for their undying support , their help and kindness with all my heart. I could not go thru this along.