Since my last ON episode, I don't read very well, however my Palm phone reads my emails to me so I can stay caught up on what the group is up to.  I subscribe to the digest so I get a handful of messages at a time.  
One of the hard things is when someone replies to the entire digest without "cleaning" off the earlier emails from the bottom of the new email.  It's those emails with the little > that show it's a copied reply.  It's not bad if the emails are relevant or something or if the digest was under 5 emails.  But my most recent digest had 3 or 4 (I lost track) sets of 12 emails, which were all read to me a day or two ago.  
I don't want to offend anyone, I just hit the wall this morning with those same 12 emails being read over and over.  My apologies.
Jen

Idea for Mr. Chief Coolness of All That is Nifty of the IT Guru Moderators of Website : Make things more searchable (specifically the things I searched for today: cellcept, IVIG, MRI) or maybe I just need a course in how to search.

My neuro is a nice guy. Nice guy does not always mean good doctor. I called him up, "Hey Mr. Neuro, I've got this issue, it's like ON, but I went to the opthomologist cuz I couldn't get in to you and he couldn't see anything wrong cuz it's in the eye I'm already blind in." Neuro said sounds like a migraine. (???) He prescribed topomax. I called him up a couple weeks later. "Hey Mr. Neuro, I've got this issue, ON won't go away, and now my hands are pins and needles and burning pain." Neuro wakes up out of coma and says MRI. I dutifully put my headache wracked head into MRI machine. MRI shows nothing new. Neuro slips back into coma and says... I quote "perhaps it's time you seek a second opinion." "Hey Mr. Neuro, I don't drive that much, and we live over 90 miles from the nearest town. How do you expect me to do that?"
Anyhow, I did my duty and called my local chapter of the MS folks which is 240 miles away and asked them about neurologists. They promised to email me a list. That never happened. I called my dad and he found a neurologist in the same city as my sister 525 miles away who actually had a patient or two with NMO. In the meantime my neuro pulled his head out of his $$$ and called me again, "Umm, Jen, I've made a few phone calls and I think I've got a new plan." "Hey, Mr. Neuro, me too. I know from the Patient Day I went to that the industry standard is to change from Imuran to Cellcept if it's not working." "Umm, Jen, yes, I've learned that as well, plus I think we'll try IVIG instead of another dose of steroids."
So, as I prep for tomorrow's appointment to actually get my grubby little hands on the prescription paper for the Cellcept and the IVIG, I'm searching for what I can find on either of these. I know I've read about them in previous emails. I swear I've seen ya'll comment on their ups and downs and side effects, but cannot find it now. Why is it that the television will warn me about the horrific side effects of a pregnant woman taking her husbands cialis but I cannot google and find side effects of off-label use of cellcept?

Hello all!
It's been a bit since I've been around. Had a nasty headache and just haven't really been doing much other than laying in bed and watching reruns. Actually been fighting with docs about the headaches. One of the problems is that there's this fun lesion poking around my brain which is causing pain, the other is that I'm deficient on just about every vitamin they test for. Tried the Depacon infusion and wasn't really thrilled. It worked, but only for a couple days and even then, I felt so goofy and out of it. When I called the neuro to report the pain was back, he suggested doing a 5 day infusion of the Depacon... yeah, if one day made me flip out, I'm thinking 5 days isn't in my best interests. So, I'm going to try a different migraine med.
The really intriguing part is that the headache calls into question the diagnosis of either NMO or MS or whatever. A severe, lasting headache is one of those red flags that signifies I might be misdiagnosed and could instead have any number of nasty different rare diseases.
You know, when I was young and foolish, I watched House and just was amazed at how many diagnoses they'd go through in a single episode before they figured out which one was right... now I realize that is a very common theme in real life medicine. How many of us have gone through the multiple diagnoses? It's really amazing that they found the test for NMO, but I want a test for everything!
One of my favorite blogs (www.wheelchairkamikaze.com) was recently blasting the medical/pharmacudical profession for caring more about hair loss and limp phallus than the serious diseases. It's too bad that we don't matter more to the folks with the decision-making power. And I really applaud guthy-jackson for the amazing work they've done so far. It's difficult to get noticed in this world of cialis and eyelash growth and they are definitely doing all they can. I guess I just am grumpy because I can pay $40 a month to make my eyelashes grow, but there's nothing I could spend $4,000,000 a month on to bring back my eyesight, and I'd certainly be willing to spend the money! (Okay, if I HAD that much money anyways.)

As it nears Thanksgiving (that rather interesting U.S. holiday with pilgrims and Indians, but ignores the whole real Native American drama...) I thought it would be a good time to list off a few of the things I am really very grateful for.

As the temps here hover between -7 and -10 degrees, I am grateful for warmth.
I am grateful for hot tea & honey to keep my belly warm.
I am grateful for my family members who keep my heart warm.
I am grateful for my friends and this group that keep my email inbox warm.
I am grateful for my children that keep my house warm.
I am grateful for my neighbors that keep my doorstep warm (or at least free from snow).
I am grateful for my coworkers that keep my office atmosphere warm.
I am grateful for understanding doctors and researchers that try to keep my body alive and warm.
I am grateful for all the moments in the day that make me laugh and keep my smile warm.
I am even grateful for all the moments in the day that I fall or stumble or have a misstep, for those moments keep me humble and keep my cheeks warm.