May 28, 2015 at 8:39 am
Fantastic Kelly. Your pride in Emily is justified; she is a gifted young lady.
I’m so glad to learn Emily is treatment and symptom free. My neurologist’s goal for me was that I would get to the point that CIDP would not be the focus of my day. I can say I’ve arrived at that goal and I rarely visit the forum anymore (CIDP is just not on my mind very often if at all). Thinking back at the tremendous weight we’ve carried over the last 6 years since contracting CIDP reminds me What a burden those of us affected by CIDP carry (patients and caregivers). So I’m so glad that you’re free of the CIDP burden and not focused on CIDP on a daily basis either.
Your vigilance and hypersensitivity towards Emily’s health is wise because of the road you’ve travelled.
May God continue to richly bless Emily and you. Sending joyful cyber hugs towards you and Emily …
GaryMay 28, 2015 at 8:21 am
Update 5/28/2015… Still continuing with plasmapheresis treatments however my neurologist has me scheduled for 1 treatment every 5/6 weeks (so far I’ve stuck to the every 5 weeks treatment schedule. The CIDP flare up between treatments led me to journal initially. Flare up symptoms: flu like symptoms; headaches; burning lips fingers and toes; numbness in fingers and toes; weakness/fatigue; twitching in legs; pain in feet; metallic/flint smell. Noted some diminished motor function in right leg, affected gait imperceptible to anyone but me. However, it seems my body is tolerating the new treatment schedule better with time. The neurologist says if I tolerate the 1/6 weeks schedule, he’ll pronounce me “in remission” and stop the treatments altogether. I’m skeptical because of the flare ups, but hopeful. The new treatment schedule is more convenient for my schedule and much less expensive.
I continue to work; I’m on a 4-10 work schedule which also is convenient for treatments.
Personal note: toured China in April (amazing trip). Expecting 1st grandbaby in July (granddaughter). Just finished teaching Community Bible Study’s 1st and 2nd Corinthians study; breaking for the summer; I’ll start teaching CBS’s “return to Jerusalem” study in September.
I pray for God’s healing for you all.
GaryJuly 14, 2014 at 1:12 pm
Hi Dawn. It’s so good to hear from you. Everything is pretty good all things considered. I didn’t think the thigh numbness was related to my CIDP so thank you for sharing your experience with arthritis causing your numbness; your experience and words are encouraging to me. I will definitely talk with my neuro and suggest an xray of the area. I will pray for you. When I talked to my previous neuro about alopecia he told me “welcome to the world of multiple autoimmune disorders” … gee thanks doc. I’ve heard some forms of arthritis are autoimmune disorders. I wonder what percentage of the CIDP folks are “in the club”. Seems I remember some unofficial Forum polls or survey threads, but I wonder if anything has ever been published on it. I think I’ll research it and see what I find.
One thing I know … multiple autoimmune disorders stink … even more than one 🙄July 9, 2014 at 7:31 pm
Update 7/9/2014… Still continuing with plasmapheresis treatments 2/6weeks on consecutive Fridays. The plasmapheresis treatments continue to be effective. Changed neurologists a couple of times (my previous favorite is now full time with the VA). The second neurologist also went to the VA (I only saw her one time).
I continue praying for remission or a cure, but so far patience is my answer.
GaryDecember 27, 2012 at 5:28 pm
That’s priceless Jim. Coke should use that one for their commercials. Welcome home Terry1.December 27, 2012 at 5:25 pm
Thanks Lori … Thanksgiving was wonderful. Thanksgiving evening here was clear and cool. My sons and I pulled out my telescope (8″ Meade LX200GPS) and took some photos of Jupiter and the Great Nebula in Orion. It’s amazing to realized how vast the universe is and how long the light from distant galaxies has been traveling to reach earth. And yet the Bible tells us there has never been a place or time that God wasn’t there. (Just blew a circuit in my brain).
Michelle, I pray that you too will very quickly get to the point that CIDP isn’t the focus of your day, but an occasional thought. Unfortunately in most cases CIDP patients have to be their own advocate; so I urge you to keep pushing/pressing your neurologist to get better and better. Don’t accept where you are as “good enough” .
Thanks for the well wishes; my wife and I are doing much better. She is walking with a cane and I rarely have headaches. Fatigue has been an issue, but I’m back to lifting weights and walking (hopefully this weight will start to come off now).
Praying that during 2013 a cure for CIDP will be found and you all will have a healthy, prosperous, and blessed 2013.
GaryNovember 20, 2012 at 2:07 pm
Hi Jim and Donna, I want to chime in on Donna’s comment on the spirit lifting quality of your posts … humor is the best medicine and I ALWAYS smile when I see your posts.
Thank you Jim. GaryNovember 20, 2012 at 2:02 pm
My wife and I were in an automobile accident 7 weeks ago. A 16 year old blew a traffic signal on a 50 mph highway we were crossing to enter into our subdivision. The crash was so violent our Outback ended up upside-down. My wife’s pelvis was broken in 5 places and she is still in pain and recovering. I was treated and released by our local hospital, but she was taken by ambulance to a Houston trauma center. I started experiencing headaches, dizziness, and weakness in my legs a week after the accident and went to my neurologist. He ran a battery of tests and the MRI/MRA revealed I had a subdural bleeding. I have had some concentration issues since the accident (concussion related). The reasons I post this are: 1) any additional trauma is extra tough on CIDP patients; avoid it if at all possible; 2) we owe our lives to side curtain impact air bags (and Subaru vehicles crash ratings); and 3) we are so thankful for our family, church family, and friends who have provided for us during this accident and our God. I realize how blessed I am to have my wife and how much she does for me; taking care of her, cooking, cleaning, laundry, bathing, house work, has worn me out. This Thanksgiving our kids are cooking for us; our kids are wonderful.
I continue to have 2 plasma exchanges on back to back Fridays every 6 weeks. I continue to lift weights, but my walking has gone down since the accident. I’ve gained weight (due to the accident and the great meals our friends have provided (and the desserts; we usually don’t eat much dessert)); the extra weight has increased my BP.
Praying healing for you all and a blessed holiday with your families.
GaryMay 20, 2012 at 12:46 pm
synthia, I get a 1000cc injection in between my plasma pheresis (PP) treatments. B-12 is an essential element in the re-myelination process. I’ve regained so much motor function and sensory function since beginning the PP/B-12 protocol that I’m a firm believer and will continue to take B-12, because I’m evidently re-myelinating or growing new neural pathways. From everything I’ve read and been told by my doctors B-12 is not toxic. I usually get a couple of weeks after my PP treatment and it does seem to give me a boost and sustains me until my next PP. When the headaches, burning, numbness, and strange smells return I know it’s time for an injection. I can’t say whether it helps with the fatigue or not, but the headaches subside.
My neuro says the headaches and strange smells come from de-myelination of my central nervous system (CNS). While the peripheral nervous system is important to me, I’m more concerned about the effect CIDP has on my CNS … if the B-12 injections make the headaches and smells go away, maybe it’s keeping the CNS damage at bay or at a minimum at least.
Hope this helps,
GaryMay 20, 2012 at 12:25 pm
Kelly, after all Emily has been through, it must be thrilling for you to see her competing and having a great time. Thanks for sharing the video.
GaryMay 15, 2012 at 4:38 pm
I’ve been diagnosed with Alopecia! I found a couple of bald spots on my head. The dermatologist treated it with steroid injections directly into affected areas. Cleared up one spot, but the other isn’t quite cleared up yet. I didn’t shave this past weekend and noticed yesterday that I also have a couple of bald spots on my upper lip (too bad it’s not my whole beard … I hate shaving).
Anyway, when I informed my Neurologist he said “welcome to the world of multiple auto-immune system disorders”. (Not mean, just a light-hearted comment in a friendly setting).
I was just curious how many of us suffer from multiple auto-immune system disorders? How about a survey?
GaryFebruary 20, 2012 at 1:03 pm
Donna, my wife and I visisted Toronto for the first time last September; beautiful city, warm and friendly people. We will return. They had a Mexican fiesta in the city hall plaza (made us Texans feel right at home). A waiter at the CN tower told us that the official language of Toronto was “broken English” … due to all the immigrants (and I always thought it was broken French). Ce n’est pas mardi gras aujourd’hui.
GaryFebruary 20, 2012 at 12:50 pm
I hope not; the forum has been such an encouragement, source of knowledge, and a place for compassion and understanding for me. I haven’t been visiting as routinely as I did early on because a lot of my friends had not been posting. I tried facebook, but it didn’t offer what the forum had given me (encouragement, source of knowledge, and a place for compassion and understanding). Jim wasn’t there to post his humorous pictures; Norb wasn’t there with his photos; Liz wasn’t there with her holiday gifs; the Taven wasn’t there; Kelly (and Emily) weren’t there; the prayer ministry wasn’t there; … I do wish my friends would return and the foundation would be sensitive to how important the Forum is to those of us with these horrible diseases.
GaryFebruary 20, 2012 at 12:29 pm
Lori, The Methodist Hospital Blood Center here in Houston started using a newer model PE machine a few months ago. When they began the PE cycle on the older machines, I noticed a pronounced chemical odor and taste; I think the old machines “slugged” the chemicals into my system. The control system for the new machines seems to do a much better job in easing the chemicals into my system. I do get the odor and taste, but it is very faint. The chemical odor and taste doesn’t produce the vasovagal response; but it does seem I’m more susceptible on the older machines. I generally feel much better and recover much more quickly when I am hooked up to the newer machines.
I’m not sure what PE machine they are using for your procedures, but you might want to keep a journal and see if you can see any trends that might help you …
GaryFebruary 20, 2012 at 12:19 pm
Lori, My blood pressure has dropped (vasovagal response) three times. The first was early on while undergoing plasma pheresis (and I’ve had many PEs now). The first BP drop was scary. Mark is correct; after the first episode I could feel it coming on, told the nurses, they quickly gave me calcium (talk about a warm fuzzy feeling … ) and I avoided the blood pressure drop. After awhile I guess my body developed a tolerance to PE and I didn’t experience the BP drop. The second BP drop happened during the “rinse back” step in the PE (towards the end of the procedure). I started coughing and having respiratory problems and the nurse noticed it and ask me if I was having problems. She stopped the machine and pulled me off. It took me awhile to recover. The 2nd DP drop was very atypical and they thought I may have had an alergic reaction; again strange since I was going through rinse back. The third time was about an hour after the PE; we were eating in a restaurant and I felt very light headed and had to lay down on the restaurant floor and elevate my legs.
I write this not to concern you about the vasovagal response, but to give you the knowledge of how it may occur so you’re ready.
Also it took a few weeks for the PE to produce results, but they were dramatic. Remember that the PE only removed the offending antibodies; your body has to repair the damaged myelin which takes time. I see your last post was 2/3, so you’ve had some to hopefully see positive results. Let us know how you are doing.
Praying you are re-myelinating and are seeing improved motor function and sensory function.