My dear Billye, I so hope you have a safe trip home and that you can (somehow) tolerate the trip back better than in the beginning.

My goodness, I can't even imagine what you have gone through to HOPEFULLY have a course of action to help you with all your medical problems.

I hope you will be able to rest when you get home so you will be able to enjoy the holiday season. Best wishes for a better 2007!

diana

Billye,

Joining in with the gang - wishing you a very safe and more restful trip hope - and hoping to hear all about your adventures/results/etc when you are recovered enough to write us! (I'll bet your first priority will be to spend time with your pups!)

Save driving - good thoughts - and gentle rest.

Have a safe trip.

Melody

Do you want to try IVIG again? If you do, and your doctors are giving you all those diagnoses, then there's a big supporting literature on IVIG. It's unscientific for them to say they are not "believers" in IVIG. It's not religion; it's science. I've been posting abstracts for Billye on the usefulness of IVIG for Sjogren's and vasculitis, and perhaps you could make a packet and take it to your doctors, then request another try. Somebody gave you a first try---would the same person try again?

Spending so much time with my IVIG nurses we chat - and I've found that a great number of their patients ARE doctors - I dont know if there are stats available on the numbers - but they are obiviously finding it helps them! I dont know how to get exact percentage of patients who are due to HIPAA regs, etc... but maybe theres are article out there somewhere?????

--and hope that the mattress arrangment is kinder going back than coming up.

Also hoping SOMETHING definitive comes out of all of that testing. (Though if they say "well, you definitely have autoimmune neuropathic complications of Sjogren's syndrome", or something to that effect, it's not much of an advance. I too hope that if autoimmunity is documented you can give IVIg at least a trial run. Gear up for a battle with your insurance company, though--insurers these days balk at anything that's pricey, no matter how much you might benefit, and no matter how many supporting papers Liza Jane may send.)

I also forgot to mention one of the most important benefits I found after taking them. At first, I was put on Prednisone 3 times daily, literally shutting my immune system down. The IVIGG's were given in conjunction with this and as my treatment progressed, I noticed that I was able to gradually reduce my Prednisone down to 1 dose per day (10mg). At one point, I was nearly off of the steroids.

I don't know if someone else will put me back on these. I notice that the Predisone is not quite as effective at holding back symptoms, so will probably have to do something before long.

Initial treatment was started in a Houston hospital. The Neurologist there who saw me took a sabbatical leave just as the implant issue was cranking up. The other Neurologist, who was putting sick implanted women on these, was forced to retire. In Dallas, my Immunologist put me on the IV's for some time. After the reaction, he didn't want me to start back. I was dismissed from his practice-after I insisted that he check me for Myoclonal Protein and it came back positive...

Like Billye, I am just worn out with all of this and am trying my best to manage with a sympathetic Internist. I know that I need to put together your chart, LizaJane, but I have boxes and boxes of test and I don't think I can get through putting this all together...

I believe the Neurologist that Billye and I both see, had some kind of problem with the IVIGG's, I want to say involving kidneys, but I don't know that for sure. I had no other problems with them... For anyone wanting to take them, I found help from the IVIGG manufacturer, who provided literature supporting treatment with this. My insurance company approved these 6 treatments at a time based on their information.


Cathie

I keep forgetting stuff.... sorry...

There was another Houston Neurologist, who was a big proponent of using IVIGG's, at least in these women who were suffering from some sort of nasty autoimmune disease, in which neuropathy played a big part.

I didn't see anything posted by Billye on whether or not the Mayos docs favored the IV's or not, but I will dig out his name if she or anyone else needs it.

You guys are all great!

Cathie
P.S. In case anyone wondered, my little Minnie is still hanging in there... She is such a comfort...

Hi - my diagnosis has never really been confirmed as autoimmune or otherwise - but the doc got approval from Medicare with no problem - just called it CIPD - even though my Sjogrens biopsy - ANA - etc were normal... I dont know if its because the nerve damage is obvious on both sural nerve biopsy and NCS/EMG - but they have never questioned - I believe many insurances pay now for "idiolpathic" type situations......

We are finally home. So much to tell you all, but so very, very tired. I made the trip home in two days, sitting up. The pain is unrelenting now. I decided I could not do the van bed thing on the way back. Nothing to distract me from the pain.

I hope to be able to get up in the night like I usually do and post some of what I learned.

Love to all,
Billye