GaryO Houston
Your Replies
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September 5, 2008 at 10:42 am
Jamie,
You said “She has struggled with depression” and something about “cutting herself.” I’ve had experience with a child who was depressed. Cutting the body was a warning sign and included thoughts of suicide.
I know you want to be sensitive and not compromise confidences, but it may be urgent to make sure Beth is getting the help she needs and not in danger.
I pray for wisdom, discernment and God’s direction for you. I pray also for Beth and the families.
Gary
September 4, 2008 at 1:12 pmJamie, I prayed for your cousin and her friend, but I have to let go of some anger towards the BF. 😡
Emma, glad to have you back online and thanks for the support. I have a friend whose daughter went through lymphoma as a child (she was married earlier this year). 🙂 Prayed for Mollie and her family.
Dawn, prayed for Cheryl (God knows what she needs and can meet it).
I guess we need to focus our weather prayers towards the eastern seaboard now (3 storms lined up).
Personal request: My tingling and numbness began getting worse again 6 days ago. My motor function in my fingers began declining again 3 days ago. My PEs seem to be wearing off. I am supposed to have a “booster” PE scheduled for tomorrow morning.
I go see the neurologist tomorrow afternoon and will discuss additional treatment (press for the IVIG) at that time.
Would appreciate prayers: to get the PE booster and that it would stop the decline again; wisdom and skills of the neuro for further treatments (IVIG?), peace again for my wife Wendy.
God’s richest blessings for you all, Gary
September 4, 2008 at 12:48 pmI felt really crummy yesterday and last night. It has been 3 weeks since my last PE. My sensory function (tingling and numbness in fingers hands, arms and legs) began declining again 6 days ago. My motor function in my fingers began declining again 3 days ago (Monday), but not significantly, yet. Monday night I hardly slept, I had a feeling of fever and heat in my extremities throughout the night. I’ve also felt heat in my knuckles and feet. Last night after exercise my right foot/leg didn’t function as well (felt like I’d pulled a muscle in my calf) and I had small muscle twitching throughout my legs and hands.
I realized last night that I had not taken my sublingual B-12 since Monday so I downed 4000mg last night and 3000 more this morning. (I also got my B-12 injection a few minutes ago. My sensory tingling is better now than it was last night. (related to the B-12???)
I reported my decline to the neurologist yesterday and asked for the “booster” PE and it’s supposed to be scheduled for tomorrow morning.
I go see the neurologist tomorrow afternoon and will discuss additional treatment (press for the IVIG) at that time.
Lessons learned: the effect of my PEs seem to last ~2 weeks; PE alone isn’t the answer for me; I seem to be able to feel the onset of the antibody flare up of the imflamation (fever and heat sensations)
Thank you for sharing Emily, educating each other through sharing our personal experiences currently seems to be the most effective way to elevate the quality of our DX, treatment and care. [B](We (all of us) have got to find a better way to get “the CIDP message” out to or educate both the medical community and the general public.) 🙁 [/B]
I will post more Saturday (PE usually wipes me out so I don’t think I will be up to it tomorrow.
Have a blessed day… 🙂
Gary
September 2, 2008 at 3:25 pmI ask that you all add one of our brothers “Rod in Louisianna” to your Hurricane prayers…
His last posting said, barring Gustov issues, he was going to Houston this week for IVIG and maybe PE .
I haven’t heard anything from him since the storm…
Suggest praying that: he’s ok, that he’ll be able to make his appointment in Houston, wisdom and skill of the neuro.
Gary
September 2, 2008 at 3:17 pmDawn, Thank you for the encouragement.
I haven’t started the IVIG yet. I go see my neuro Friday (9/5/08). I think he will be astounded by the progress I’ve made on the PE alone.
However, I began to notice this weekend that the tingling and numbness in my fingers and hands is increasing. My motor function has not regressed though.
I will keep posting progress on the B-12 deficiency thread.
Anyone heard from Rod yet??? He was probably in Gustov’s path.
Gary
September 1, 2008 at 7:11 pmby the way Rod, good luck on your treatments. I’ll pray for the PE and IVIG to work, but if not that you’ll find something quickly that does.
Gary
September 1, 2008 at 7:09 pmRod, my new doc is Dr. Dennis Mosier at Baylor College of Medicine.
He is really easy to work with.
Dr. Laveck (sp?) is the Methodist PE Doctor. He is also really on top of my treatments.
I’ve heard good things about Dr. Appel as well.
How did y’all fair Gustov? We were certainly watching it closely. My house is 10 miles from the Surfside beach and at 21′ elevation above sea level. A cat 4 storm is supposed to cause us a lot of problems here.
Hope you faired well. It looks like it moved through quickly.
Gary
August 29, 2008 at 4:19 pmDawn,
I too reasoned that PE to remove bad antibodies followed by treatments to impact the immune system is the way to go (at least for me) so my neurologist and I chose that course.
So I am a test case for your theory of PE before IVIG and will try to log my response in the B-12 deficiency thread.
I had 5 PE’s in 7 days (August 7, 8, 11, 12, 13). 9/5 I return to the neurologist; the next step in the plan is for a “booster” PE followed by IVIG. I began seeing improvements (motor and sensory) within 7 days of the last PE.
***** Anyone reading this thread please realize what works/doesn’t work for one person may not hold true for others (caveat emptor) *****
Gary
CIDP symptoms began 3/08
Incomplete DX (B-12 deficiency) 5/08
Positive CIDP DX 8/08
Treatment begins 8/7/08August 28, 2008 at 1:54 pmMarge,
The best Margarita pizza on the planet is found in a restaurant called Grotto’s in Houston … Westheimer at 610 loop … mmmmm. Earl Grey Tea is my favorite hot tea. Love fig newtons too, but never tried the 3 together as a combo meal.
My wife and I have Chocolate Coma Cookies (Diane Mott Davidson recipe) every evening … they fuel this newtonian machine quite nicely…
I’m drooling on the keyboard. 😉
Gary
August 28, 2008 at 1:11 pmKelly,
My demylenation progressed rapidly and a couple of months of incomplete DX and inadequate treatment cost me significantly.
I didnt get a complete DX or begin correct treatment until I found the right neurologist.
My current neurologist is a [COLOR=”black”][COLOR=”Red”]neuromuscular [/COLOR][/COLOR]specialist who has treated CIDP.
Fortunately for me there are multiple university hospitals here with multiple specialists so I didn’t have to hunt long or travel to find the right one.
A neurologist who specializes in neuromuscular disorders and one who has treated CIDP might be your best bet.
Push, push, push, don’t allow delays or 3 more months to go by and settle for seeing the same neuro. From what I’ve seen and experienced time is of the essence.
I prayed for you today.
Gary
August 28, 2008 at 12:17 pmHullo friends. Is this the place where everybody knows your name?
Glad I stuck my head into this tavern door. I have never been here before. You should advertise more. (Or is this a private pub?)
Wow, this is a big ship. I like these little drinks with umbrellas (even though my drink is a virgin smoothies are good too). And I can keep the souvenir glasses too. I hope I can fit them all into my suitcase.
Anybody up for shuffle board? (Shuffling is my standard mode of transportation these days 😀 ).
Can’t wait until we get to the next port.
Gary
August 27, 2008 at 11:25 amLinda, Thanks for the update. Know that I will be praying for you as well. I’m encouraged that you have direction. My spinal tap confirmed my CIDP DX (and wasn’t any big deal for me). I will pray the same for you. I will also pray for your heart and thyroid, correct diagnosis, treatment, sleep, peace and strength.
Hang in there. Gary
August 26, 2008 at 10:46 amJust saw that LindaH has an appointment today. Pray that from this appointment she will get the right treatments started immediately …
Gary
August 26, 2008 at 10:44 amI’m on my knees … and you’re before the throne of the Most High God!
Gary
August 26, 2008 at 9:19 amDawn,
CIDP is scary and unknown.
It is also a very heavy burden to carry.
Two of my favorite Bible verses come to mind …
[B]Galatians 6:2 [/B]Carry each other’s burdens, and in this way you will fulfill the law of Christ.
[B]John 14:12[/B] [COLOR=”Red”]I tell you the truth, anyone who has faith in me will do what I have been doing. He will do even greater things than these, because I am going to the Father.[/COLOR]You’ve probably heard the story of the statue of Christ in a European Church yard that lost it’s hands during one of the world wars. The hands couldn’t be restored, but an inscription was added “Christ has no hands in the world today, but yours”.
I believe God calls us to work for Him (and they’re more often than not unpleasant or difficult tasks). But often we get a deep satisfaction from the serving that transcends the task.
But from me personally … Thank you for answering His call. Thank you for helping with my burden. Thank you for being Christ in the world today for me (for us).
This discussion forum (you, you all) have illuminated the path and lightened my burden.
Gary
