Hi guys

September 9, 2009 at 7:05 am

Can I tell you how much I love you for your collective responses. It’s hard for a man to say “I give”.

I have my first Rheumatologist App’t today. I am very upbeat about the prospects as I know that I have an underlying arthritic condition that is knocking me around like the ol’e rope a dope…And I’m the dope.

Your words of encouragement will stand as a testament of your caring love and kindness toward those you do not even know but felt inspired to reply at the time I needed you most.

We need a better word(s) for “Thank You” in our normal english vernacular. I cannot thank you enough for your smarts, your caring attitude, helpful comments and you have staved off my hardest moments and made them okay.

Much love to you all that felt compelled to reply to me. My gratitude is complete because you help me keep my family intact and my priorities straight. Thank you.

Your friend,


Hi Guys

February 5, 2008 at 11:58 am

just wanted to update you to what has happened with my situation. I did get in to see my Neuro about 2 weeks ago. He feels like IVIG is probably the way to go. However, he wanted to run 2 more test. I am having an EMG tomorrow, and I have a lumbar punture scheduled later this month. I have never had a LP, and its been about 5 years since I had an EMG.

He said he wants to confirm that the cidp is active, and he also said that its beneficial to document , for insurance purposes, that the cidp is active. That way if it is necessary for long term use of IVIG, due to the high cost, they will be less likely to refuse payment. He said the initial treatment would run about $15K. At least, thats how I interprited what he said.
Any thoughts?

I’m just ready to get the ball moving, so to speak…


Hi guys!

December 27, 2007 at 11:44 pm

Got your posts and appreciate one and all. Gabrielle, we do have alot of similarities and you wrote down alot of the concerns going around in my head. The mri of the base of the skull and spinal cord has been sched. for Jan 2. Mri’s are to be read by a neuroradiologist. MD says if I’m not better by Jan 11 with getting ot / pt, he wants me to see a neuromuscular specialist. I don’t think I’ll wait that long…feeling that I may as well go on and scope one out. Guess I don’t understand why docs are so hesitant to order the ivig. The consensus seems to be “what’s the harm”? My thought is, even if it’s transervse myelitis of the spinal cord, wouldn’t ivig be a good tx? Dawn, tests already done for myasthenia gravis…all negative. I asked about ms but md’s prefer dx of gbs (although atypical) due to onset sx’s and present sx’s. Thanks for the vote on ivig treatment, Gene. You guys are so knowledgeable and supportive…can’t thank you enough! I think my family is getting pretty frustrated and I’m trying very hard to be positive for all of us.


Hi Guys

August 8, 2006 at 12:31 pm

Guess what? I am sitting here in Indianna visiting my daughter. My son and I went to the Ohio State Fair last night and saw Steven Curtis Chapman in concert and then drove on to alyssa’s house after that. We arrived here about 1:30 in the morning. Boy what a relief to see that she is living in a nice apartment and a safe place. I hope i can help her out while I am here. Just wanted to let everyone know i’m not BLUE anymore.


Hi guys

June 14, 2006 at 2:24 pm

I also take a multi vitamin. started taking it when i first started having symptoms and continue to take it now. I can tell if i run out of vitamins for a few days. less energy.

take care