I saw my very first rheumy this week, even though I was tempted to cancel, afterall who among us needs yet another doctor? I was positive he was going to say I was over fifty now and this is just the aging process. Wrong!
First, he was ticked off that the PC at my spine and pain clinic hadn't sent my records, said it makes him look ill prepared, so he talked with me while we waited for those. I told him my mom has arthritis and heart problems, my mom, grandmother and daughter all had/have thyroid problems, my grandson is a two time bone marrow transplant survivor of AML leukemia and my 25 year old daughter died in 2004 from disseminated HSV and she was in remission from ITP. I don't know much more than than because both of my grandfathers are unknown to me and I had been healthy up to February of 2004 when I got Idiopathic PN.
He was a little upset that my neuro didn't go any further than an EMG for diagnosing my PN, since alot of autoimmune conditions have PN as a "side effect". He walks out and comes back with my stuff from the pain clinic and starts to talk about iron buildup in the bones and such, and talked about I hadn't gotten the right blood work, he needed and ANA and something else. After that he was going to talk with his colleges about the iron buildup thing and look at lupus...I wish I had absorbed more, truly I was taken back that he is seeming concerned and most of what we talked about didn't stick in my mind. Now I am wondering what questions to ask him next, what I looked up says iron buildup in the body is genetic, seldom from toxicity. The treatment is giving blood to reduce the iron in the body, if undiagnosed it can be fatal because it destroys the liver. I have alot to ponder, I googled my daughters Disseminated HSV and danged if I didn't find this:
http://www.pubmedcentral.nih.gov/art...?artid=1448683 , a paper about my daughter! I am a bit ticked off, I feel my permission should have been sought and I will email the U. of Wa. Medical Center to let them know.
Strange week for me and I would welcome any thoughts or suggestions. Does it seem that there are alot of autoimmune conditions in my family that are genetic or envirionmental, I have often wondered about our aluminum plant and fiber board mill that used benziene before the EPA got on them. I am worried, but maybe thankful that I do have something more treatable.

You might be able to find records of class action suits involving similar medical cases related to the aluminum plant and fiberboard mill, or the beneziene. Perhaps groups of people will have similar problems to the ones you and your family have?

And sometimes you give permission to the medical personel to release records without even realizing it. My recent hospitalization for the fractured sacrum is an example. The first week I was in the hospital was an absolute blur to me. I can remember people coming in and out and papers being signed but have no clue what they were. I'm sure your daughter's illness was stressful and perhaps you or she/her family signed paperwork without realizing it.

Billye

Congratulations on finding a rheumatologist who is taking you seriously and who will take steps to find out what you do and don't have. You deserve to get to the bottom of what ails you if it is possible to know. Knowledge is power.

You can definitely inherit a tendency to develop a certain autoimmune disease. It doesn't necessarily mean you WILL get it, though, it just means you are more likely than a person with no such ailments in their family. Some autoimmune diseases have proven genetic links to others, such as Sjogren's, celiac disease and type 1 diabetes.

Example: I had a great aunt and great uncle with type 1 diabetes. My father's generation had no one with autoimmune disease, but lo and behold, I get Sjogren's and celiac. My mom had Raynaud's and thyroid disease, and I got both of those as well.

I am not very knowledgeable about PN, but it would seem to me that you could benefit from knowing whether or not it is caused by an autoimmune disease. It might be easier to predict a course for the PN. Perhaps it would be easier to find an effective treatment too.

I would suggest typing up a list of questions for the doctor, adding to them whenever you think of something. I find it very hard to think and converse in a doctor's office and usually bring something in writing to help me. You could also ask the doctor's office for a copy of the notes he made during your visit.

I am sorry about the shock of reading about your own daughter online. I don't know what else to say about that.

fanfaire

harps endlessly about GETTING COPIES OF YOURE RECORDS??? Now you know why!

This happend to me about 2 years ago while seeing a sub-super-specialist about some vision issues...All records [and I'd CALLED ahead to the referring docs' offices] had been 'sent and received'....well, someone's got them and is likely still going DUH? What do I do with these? That I was able to get some key test results and reports was of enormous help to the specialist seeing me...As a result? Vision is 'off the list' of key problems....

Weird thing is: I'd called the 'referring' doc's office and the 'referred to' doc's offices the day before to be sure and I was assured all was all set to go...until I got there...You really have to 'chill out' about such mishaps, they should not, but do occur...as happens in all of life...

It's just sooo much better to go "TAINT SO!" Here's MY copy, make one and return to me that ORIGINAL please...and go forth and fight...

As for toxicity? That's the kind of issue for specialty medicos...and they are a very rare breed few and far between. let me know which particular specific issues/toxic combos you want to find...I'll search it out...no guarantees tho..

Good thoughts -really for the interim tho..that rheumy sounds sharp...just hope stays that way! You know what I mean... - j

Please get copies of all your test results and keep records of them in spreadsheet form, if you're up to it.

It's key to keeping things on track, and making sure everyone knows what everyon else is doing.

As you know, I've put up a website just for us pn-ers to have a listing of all the tests which might be positive and give a cause for our problems.

The charts are at www.lizajane.org.

Here's mine, which is uploaded to the site:

http://www.lizajane.org/PN/Users/liz...e%209,2007.xls

It represents years of tracking down lab results, but it was the only thing that made this week's visit to a new rheumie useful. Even with a letter of refeerral, there'd have been no way he could see what was done by other doctors at other times. He only drew blood for the couple of tests which needed repeating, seeing what had already been tested.

Please please call every docto who's done any tests and ask that all results be faxed to you or mailed to you. You can write in the results by hand, rather than typing them, if that's easier.
But make a looseleaf, and invest in a three-hole puncher and just keep them all together, at the very least.

Good luck with the work up. And, while I know you feel offended that your daughter's case was published without your permission, my own take on it is alittle different. I see her identity is never given away, and it is published because somebody might learn from it. Her doctors are showing a lot of respect for what happened to her, and don't want anyone else to go through it, so they've gone way out of their way to publish a case where all their efforts FAILED. This is admirable, and way too uncommon. Think about it some more, and maybe you'll end up feeling the way I do, that this is the ultimate respect for her and for you. This a grieving mother doesn't need to deal with, in addition to everything else. They are thinking about your daughter, even in her death. That's remarkable. No consolation, of course, but truly, it's respect.

Wow, thanks for all the replies. Liza Jane I've known for two years I have been remiss in not asking for copies of my tests. The saving grace for my doctors is they can all bring up my stuff on the hospital computers, the down side is not all my work has been done there. Yes, I will make some phone calls and start that right away, I may ask for your help on some of it if that is okay.
I did write my email on my daughters paper, first, I expressed my feelings on not contacting me prior to the printing but most importantly I corrected a couple things they got wrong. I know the paper will save someone else's life, I had already given a scientist permission to take blood and records to research and maybe help babies born with this condition. I did consent to autopsy, no other family should ever go through this, it was a horrible illness and it was a horrible time for my daughter and for us.
I just read in this Sunday's Parade magazine the importance of a medical family tree, so I will work on that as well. I knew I needed to type down my meds and questions and lazily never got around to it. Things like my elbow is swollen for the last couple of days, did I cause this by leaning on them. This morning my trigger thumb is back, third time and now the Dr. will want to do the surgery to release the tendon. I forgot to tell the rheumy about my achilles tendon tightening up on me in the last few months making walking a challenge, so yes I need to work on that.
I did my research on benzene when I realized that cancer is rampant in this valley, my grandson, my daughters best friend, another fellow my grandson's age. Four middle-aged men that belong to my credit union are all battling cancer of pancreas/liver, I know this because I do collections and am helping them through their fianances. Breast cancer is off the charts, in thirty through forty year old women here. I thought about contacting Erin Brocovich since I know she has the resources now to do something. I also know that here in Montana thyroid cancer is high in milk drinkers my age. Thank you for doing your nuclear testing in Nevada when the jet stream was going north. I also think Chernobyl has added to it, that jet stream was coming to us in what they call the "artic clipper".
I see I am starting to get on my soap box, I know I can do that here. I also know I am responsible for my own health and that sometimes I need a little prodding to head in that direction, thank you all! Everyone have a great Sunday, I would like to give a certain principal in Texas a major wedge and throw in a swirly to boot, being attack because you have health problems by your boss is unbelievable. My boss has been absolutely fantastic about my health problems, I can even do part of my job from home..

You know how much I talk about getting a copy of every test result before walking out of the doctor's office? It's a MUST. It's the only way you keep control of things.

Also, with pn, it's important to have some control of the work=up. That's why I put up the charts on lizajane.org. They're nothing that couldn't be found in other places on the net, but they are a substantial list of all the tests which could be abnormal and indicate the cause of the neuropathy.

Please,please go to the site and download the charts. Bring them to your docs and insist they look at them and go over their thinking on them with you.

is to ask your insurance company and pharmacy[ies] for summary copies of your claims and prescriptions...these usually go back 2-3 years, other can go back further. Their use is for those times when you are referred to another different [not regular] place for testing and all that. That way you know exactly what meds you were on when, and which docs to see to get records from.
Specialized tests you may have to go to each doc to sign release forms to get the info. Some docs won't release another doc's tests results to the patient...strange quirk in the 'interpretations' of the privacy acts.... Usually it entails [this is how I do it] calling and asking for the release form...filling it out, hand delivering it to that doc [along with showing of ID] then being notified of any copy costs-paying them, and have the records sent to you...It is a hassle, but if you don't get copies and a doc retires..well, you may never get them.

I hope this all helps.... with a few needed 's . Sounds as if they're needed. - j

You only use bottled water, I'm hoping.

We have an artisian well (underground river) the gives us 750 gallons a minute if we wanted it. It is VERY high in mineral content, our water turns everything orange without our softener. Our water was tested last about ten years ago and it was rated very good, well we have had a population boom here in the Flathead Valley with lots of new homes drawing on the aquafir so it has crossed my mind in the last year that maybe it isn't so safe anymore.
I went and filled my culligan bottles today until I can get a new testing on our water. Just to be cautious and put my mind at ease, Liza Jane you prompted me to think about this again and once agaoin the suggestions of people here often lead you to make moves you have been putting off or hadn't even thought of.