GaryO Houston
Your Replies
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February 6, 2012 at 12:22 pm
At my last appointment Dr. Mosier told me he has his son back. It was quite a story (awful). Praise God Andrew has been returned to his father.
Thank you all for your prayers… God listens and still is in the prayer answering business…
Gary
February 6, 2012 at 12:18 pmWow, has it really been 250 days since I last posted? I’m still being treated by PE alone (2 PE’s every 6 weeks on back-to-back Fridays). My health, fitness and symptoms have stayed relatively the same. I’m staying very busy with work, Bible study, teaching Sunday school, and travel.
My last PE was last Friday at Methodist Hospital Blood Center Houston. The blood center was very busy and I waited 1.5 hours to get in. There was a young lady there with sickle cell anemia, another young lady with a lipid or platelet blood issue, a fellow with a trache, and another woman undergoing PE. There sure are a lot of folks who has it pretty tough. Made me again count my blessings (having CIDP stinks, but I am blessed).
I remember my neurologist’s objective from my diagnosis was to get me to the point that “CIDP isn’t the focus of my day”. And there are times I don’t even think about CIDP during the day, but it’s with me daily and there’s not a day that goes by that I haven’t thought about having CIDP. However, CIDP isn’t the focus of my life (thank you Dr. Mosier).
May God bless you all,
Gary
September 21, 2011 at 12:51 pmTrue!!! Praise and thanks to God!
TNP has seen fall foliage already this season!
September 21, 2011 at 12:49 pmI take B-12 by injections (1000mg). My treatment routine is 2-PE every 5-6 weeks (usually on the 5th and 6th Fridays) and I usually have the B-12 injection during the 3rd week after my last PE.
I’ve had low B-12 levels ever since they began doing the analysis during diagnosis.
Gary
June 5, 2011 at 10:26 pmWelcome to the family Blake, sorry that you have CIDP though. What center in Houston are you visiting? Baylor College of Medicine has some knowledgeable docs (testimonial); if you don’t find a neurologist that you trust and think is an advocate for you, let me know and I’ll recommend one. Read about others experiences with IVIG on this site. From what I’ve read its not atypical to not feel different after the 1st infusion. I’m treated with Plasma Pheresis so I can’t advise you.
Variations in symptoms of CIDP seems to be the norm. My neuropathy was bi-lateral and peripheral, but I also have some central nervous system involvement as well.
Please keep us posted on your progress and ask many questions. The best way to deal with our disease is together.
Gary
June 3, 2011 at 9:42 amTrue, but we have it relatively good here south of Houston. $3.44/gallon.
TNP (Oooo just had a male cardinal land in my back yard…)
TNP has an empty bird feeder.
June 3, 2011 at 9:39 amKazza, At my worst I had a lot of trouble with hand writing (and keyboarding as well). An occupational physical therapist at my church gave me a “pen again” ink pen and it gave me the ability to write again. You use different muscles with the pen again product; and it works. [HTML]http://www.penagain.com/[/HTML] is the web site, but it looks like you can order them from several different suppliers. Hope this helps you; it helped me (and the pen is such an interesting design it generated a lot of questions and conversations).
Gary
June 1, 2011 at 9:38 pm94 degrees hot humid and dry … we’re over 10 inches behind our average annual rainfall for the year.
And summer’s still 20 days away 😮
June 1, 2011 at 9:36 pmThank you for your service to our country Jim. Gary
June 1, 2011 at 7:54 pmMy PE last Friday went well. I was on the new machine and the PE lasted right at an hour (new record for me). I didn’t experience any adverse effects either. My shoulder pain is almost gone. I decreased my upper body weights and increased the reps dramatically; consequently my bursitis has almost cleared and I’ve maintained or increased my muscle tone and strength. I still have a little mobility issue in the left shoulder though. I bought some new irons (Calaway X-22 tour) and spent last Thursday lunch on the driving range. I won’t part with my Wilson FG-17’s, but the Calaways seem to take off hits much better … and I don’t hit the sweet spot quite regularly as I used to. (Sorry about the golf prose; please excuse an old golfer getting carried away.)
I have my next PE this coming Friday (still on the two PE’s every 6 weeks on back to back Fridays treatment protocol). But I made it relatively easily to the 5th week this time and even felt quite “back to normal” at times.
I radically changed my diet and have lost over 10 pounds … I think the diet change contributed to how I felt. So I’m sticking to it.
Gary
June 1, 2011 at 7:42 pmSo happy for Emily and you Kelly. I made the same remark to my wife Tuesday; then the CIDP flared up again. Oh well, sigh … CIDP hasn’t gone away after all.
My neurologist said early on his goal was to get me to the point where I wasn’t focused on CIDP every day. We’ve achieved that and so much more. God has been very good to me.
I pray that God will grant Emily complete healing and she wouldn’t live a life focused on CIDP.
Gary
May 30, 2011 at 7:04 amHey Michael, it’s interesting how old posts keep surfacing as we seem to have similar experiences. I too was initially diagnosed with B-12 deficiency (although my EMG was classic for CIDP) and treated with B-12 injections. As I continued to spiral downwards I was later diagnosed as having CIDP and confirmed with lumbar puncture.
I do continue to be borderline B-12 deficient and take 1000mg injections midway between my plasma pheresis procedures (two PEs every 6 weeks on back to back Fridays).
Insist with your doc that you want the B-12 injections and don’t take no for an answer. They’re inexpensive, safe and can help with the pain and your energy level (and ensure you have enough B-12 available for your body to use for the myelin repair processes). Unfortunately the pain in my feet hasn’t gone completely away …
Wishing you success … Gary
May 10, 2011 at 10:09 pmTRUE! and I’m not ashamed to admit it.
TNP had a happy moment today (what was your happy moment)?
May 10, 2011 at 10:05 pmDear Old,
Sorry to hear of your wife’s continued decline and that she’s been battling CIDP since 2004. Please pass along my cyber hugs to her and let her know she’ll be in my prayers.
Gary
May 10, 2011 at 10:01 pmDonna, I was thrilled to see that you had run again (I agree, Praise God!). My hope is there is no CIDP in heaven 😉 .
I know it sounds counter intuitive, but I’ve heard drinking the right amount of water helps the body rid itself of excess fluid build up. Check with your doc…
Hope you’re running again soon … without the swelling.
Gary
