Price Wooldridge

Do you have any reasons you’ve thought of that cause these big swings? Me it could be a missed dose, the last week of my IVIG cycle, an overactive day, or excessive heat. If you think of what may be causing yours, let us know.

@theshame Hi Tim, I’m glad so many have reached out to you in our community. That’s what it’s all about. I’ve been busy and just getting to a response where so many other already have.
Some points, I’m glad you got your diagnosis and found a neurologist who was willing to work through it with you.
Having had epilepsy, you should discuss with…[Read more]

@theshame Hi Tim, I’m glad so many have reached out to you in our community. That’s what it’s all about. I’ve been busy and just getting to a response where so many other already have.
Some points, I’m glad you got your diagnosis and found a neurologist who was willing to work through it with you.
Having had epilepsy, you should discuss with…[Read more]

Bernie I am probably a 3 too. Sometimes it’s kind of explainable, but often a mystery. That’s LEMS.

David, I think latex is frequently an offender because I see latex warnings fairly frequently around the clinics, especially relating to procedure gloves.
My IVIG overpatches originally caused me blistering and redness. When I discussed this with the infusion nurses they switched me to another call and IV3000 which seems to have lessened the…[Read more]

Y Petrie thanks for the link to see one of these. When you first mentioned it, I went out and Googled to see it.
I’ve had my Bard Power Port for years, and it ONLY get’s used for my infusions. And I prefer it that way because of the sterile, precautionary measures that must be done to access it. No blood draws, no ER nurses trying to use…[Read more]

I just was retested by a new neurologist, even though I have been on IVIG antibodies therapy for years. My results just came back negative. Obviously, this makes me very uncomfortable, because I have my original Mayo Clinic lab results from my diagnosis, which were positive.
I’m concerned becausese I don’t know what my new neurologist is going…[Read more]

Interesting Bernie. If I recall you did not respond to IVIG antibodies therapy either. Please correct me if I’m remembering incorrectly. Just wondering out loud, would the lack of P/Q or N antibodies account for this. That might be q question I’d ask my neurologist. Thanks for responding!

Yes, thanks for this report. It’s interesting that these reported symptoms are all high up. Myasthenia Gravis is generally considered a top down disorder and LEMS the opposite, a bottom up disorder. This illustrates how commonly held assumptions are not always correct.