I want to appologize. I need you guys!!!
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October 12, 2009 at 12:10 pm
whoops. I am out of the choaky you can put your rotten tomatoes away. hehehe. I want to appologize to everyone especially withhope. i went back and read your post again and realized that your intent was not to indict my credibility but to be objective.
In my defense I was in the hospital and that day they had droped me from 100mg of solumendrol to 60 and then down to 30 in 2 days so I dont think rationality was a attribute at that point. I totally understand the need to uphold rules even 250 year old blue laws so that this is a sight that anyone can feel confortable to go and use so I really am sorry. so enough on that I dont want anyfurther lectures lol:D .
SO 2 genuine cases of acute ascending polineuitis. and 3 bouts of chronic presentation as well over 7 years.
a possitive ANA of 1:800 ( this year is the first time in my 7 year history that ANA was a factor)
what could this be?my theory…
drug induced lupus as the lupus like symtoms started with a drug that causes DILE and started to subside when I discontinued the sulfa and macrobid
I think it stired up my natural autoimmune response which is some sort of ascending polineuropathy.
my cruddy neurologist who I previously thought was the bees knees dropped the ball on me and as soon as he saw the ANA threw his hands up and said see a rheumy. but there are only 5 rheumys in the whole las vegas valley so what do I do until then? “oh heres some steroids.”
I called the MAYO and they found me to be facinating enough to see my at the end of this month for a week long work up. yeah. they are out of network and this will probably finacially break me but I dont care.
I know how statistically anomalous this all is but please bare with me as I get this all sorted out. the only people who know more about this disease than the true experts in university hospitals is you guys so please bare with me
the PE treatments were 100% effective. I feel better than ever right now.
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October 12, 2009 at 1:25 pm
glad you’re doing better.
welcome back.
alice -
October 12, 2009 at 1:59 pm
Hi Tara,
That took immense courage to apologize. Asside from roid rage, this disease itself is an emotional rollercoaster. I don’t even have it, my 12y/o does and I get angry and defensive OFTEN! Your description of your results post pp is encouraging, on two fronts, obviously the positive affects regarding cidp issues and possibly cleansining the drugs that you fear gave you the drug induced lupus. PLEASE keep up with the pp treatments. Just an out loud thought, if pp cleanses the blood, does it totally cleanse the steroids out of your system? If so, do you still need to wean of of the steroids, or did pp take care of that? Also, I remember reading that some people have bad responses to steroids. I am so glad that Mayo is going to take you!!! BTW, did the doc feel that the ivig has tainted the ana results? Good luck, hopefully Mayo can figure out a proper dx and a regular treatment plan so that you can start getting better!!! Better pack some warm clothes, if you are going to the Mayo in minnesota, it is snowing!!!!
Dawn Kevies mom -
October 12, 2009 at 9:04 pm
:rolleyes: I’ve been a crank this past week, and it had little to do with gbs/cidp.. I had to watch the Minnesota Twins drop 3 games to the Yankees….:D I hope the Mayo can help you get on track.. Obviously, something is going on, and hope you don’t become a financial wreck trying to find out.. Hope things start going good for you…:)
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October 12, 2009 at 10:33 pm
OK you are in constant pain, from one thing or another, and NO ONE KNOWS?
Excuse me doctors, PLEASE CAN YOU SORT THIS ALL OUT????? Or the like.
And, what makes it all truly freaky? It just keeps getting worse!
Good that the PP WORKED! Great that the Mayo is gonna give you a once over. Gotta warn ya tho? That they are very, very stingy [from all I’ve read] about IVIG as a help w/all this. JUST BE SURE to get copies for yourself of ALL the test results and write ups!
After that? Either your current neuro is gonna be backed into a ‘professional status’ corner? Or, you are on the ‘second opinion’ train, to find a neuro you feel you mite be able to work with.
Best phrase about this? Is: We haven’t been communicating well. Then leave it at that. Here? You can complain, but docs are worse than old maids in talking to each other! Maybe best to find new neuros who work out of hospitals your current neuro does not work in?
Lastly? You don’t have to apologize for for your crabbiness to me! I have seen much worse consequences of sudden medication withdrawal in others and at times, it can ruin lives. Getting it out, is healthy in a way? It helps YOU realize that some very major changes were happening to your brain. It’s both a scary and amazing thing. It does tho deserve respect on your part to really learn about your meds [web up each med: ‘prescribing information’] and READ IT ALL! It helps keep you alert to changes, even subtle ones, that can and DO go on in your mind and body.
Ultimately? Take everything you learn, and what your docs say with hefty grains of salt. Then, find your own way thru the morass of ‘multiple medical issues’! {BTW? I GOT ‘EM too!} Hugs and use, if necessary some ‘duct tape’ to help keep it all together!
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