GaryO Houston
Your Replies
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August 25, 2008 at 3:41 pm
I’ve been out awhile so I thought I would provide an update … and thought a “praise report” might be encouraging news that some could use.
I’ve now had 5 PE’s (5 in 7 days – they gave me the weekend off). I had a B-12 injection and left for Seattle to embarc on an Alaska cruise (more on the cruise at a latter date) the day following my last PE. My worst CIDP day so far was the next day in Seattle before we boarded the ship. I was so very weak, winded and light headed.
Praise be to God, the good news is that the PE’s seem to have worked. I have regained significant motor control and strength in my fingers, wrists, toes and feet and I am seeing daily improvement. The sensory has improved significantly as well, but sensory seems to also wane somewhat throughout the day.
I have a follow up with the Neurologist on September 5th and he plans to schedule a “booster” PE afterwards. Also we’ll talk at that time about the next course of action (IVIG probably – my glucose test indicated diabetic so steroids are now an unpreffered treatment that will require hospitalization if we go that route). I have an appointment with an endochonologist to follow up on the glucose test…I’m not sure I believe the diabetic diagnosis…
We serve an awesome God!
LindaH, I lifted up your request just now, I am sorry I was out and missed your request.
Gary
August 25, 2008 at 3:29 pmI’ve been out awhile so I thought I would provide an update …
I’ve now had 5 PE’s (5 in 7 days – they gave me the weekend off). I had a B-12 injection and left for Seattle to embarc on an Alaska cruise the day following my last PE. My worst 🙁 CIDP day so far was the next day in Seattle before we boarded the ship.
🙂 More on the cruise at a latter date 🙂 .
The good news 🙂 is that the PE’s seem to have worked. I have regained significant motor control and strength in my fingers, wrists, toes and feet and I am seeing daily improvement. The sensory has improved significantly as well, but sensory seems to also wane somewhat throughout the day.
I have a follow up with the Neurologist on September 5th and he plans to schedule a “booster” PE afterwards. Also we’ll talk at that time about the next course of action (IVIG probably – my glucose test indicated diabetic so steroids are now an unpreffered treatment that will require hospitalization if we go that route). I have an appointment with an endochonologist to follow up on the glucose test…I’m not sure I believe the diabetic diagnosis…
Gary
August 8, 2008 at 7:38 pmTHank you saints! I didn’t experience the “vaso” BP drop today at all. I felt a little stressed a couple of times and remembered the prayers being lifted towards heaven for me and immediately felt a calming presence of the Holy Spirit. I felt a little flushed and they immediately gave me some calcium and it went very well.
I was reminded again of the people who lowered their friend through a hole they made in the roof to get him before Jesus. Thanks for carrying me to the Lord today.
Hoping to return the favor…
Gary
August 8, 2008 at 10:09 amI’m having my 2nd Plasma Exchange today. During my 1st one yesterday I experienced the “drop in blood pressure” syndrome. The docs said it would probably never occur again and that stress probably caused it.
The procedure wasn’t particularly stressful to me (I was a regular blood donor before CIDP), but now I’m stressed that the drop in blood pressure will occur again.
I would like to have some prayer coverage at 1:00CT that I wouldn’t be stressed and that I would go through the PE without a drop in BP.
Psalm 48:14 For this God is our God for ever and ever; he will be our guide even to the end.
Gary
August 7, 2008 at 11:40 pmThanks all for the replies. I’ve been out the last couple of days in a whirlwind of procedures.
I had my lumbar puncture Wednesday and begun my treatment with my 1st PE this afternoon. The second PE is tomorrow.
I’ve heard third hand that my neurologist is thinking pulse steroids may not be for me due to my glucose tolerance blood test. (I’m supposed to see him tomorrow and I will hopefully know more then). I am not diabetic so I’m not sure what that’s all about.
The lumbar puncture was not a big deal. During the PE though I had a drop in blood pressure (I don’t remember what that is called (v——–)). It was unpleasant, but corrected quickly and the procedure finished. I was told it probably won’t happen a second time.
I will repost as soon as I hear back from my neurologist about the pulse steriods and/or after my next PE.
Gary
August 4, 2008 at 8:35 amEmma, I do brace myself against the wall when putting on my pants. I’ve found I stand on my pant legs with the other foot sometimes and I get stuck … one leg in, one leg half in and nowhere to go. I bet it would look pretty humorous.
I never thought of a dress though hmmm, would probably have to shave my legs… Maybe a kilt. I may have some Scottish background somewhere.
😀
GaryAugust 3, 2008 at 7:40 pmShave with a Razor. 😮
My face is starting to look a little carved up. If I could grow a beard I would.
I did find a “button holer”. A device that helps you button shirts. If anyone is interested I might could find the web site for the device and pass it along.
It doesn’t work so well with buttoning pants though.
Recently I worked so hard on buttoning my pants (and I was so relieved that I finally got it) that I forgot to zip them. 😀
Gary
August 2, 2008 at 3:56 pmWear button shirts. :rolleyes: Polos seem to be my new fashion statement.
August 1, 2008 at 8:16 pmJust talked with my neurologist about treatment. He recommended trying the IV Steroids first. I was leaning towards PE. 🙁
He said he’s had good success with IV Steroids and would follow up with IVIg as needed.
Has anyone out there had success with IV Steroids? Are they the “normal” 1st approach? :confused:
Thanks, Gary
August 1, 2008 at 7:55 pmJanet, thank you. I prayed for discernment, wisdom and the right words for you.
Jamie, can’t imagine going through this with a new little one, but what a true blessing a child is. (mine “little ones” are both married and I’m looking for day we get grandchildren) I pray for your health, strength and protection until your Dx.
Emma, thanks for your encouragement. God has blessed our relationship (started dating in high school married 33 years this coming Aug 15th). My wife has a strong walk.
May God bless you all with a wonderful nights rest in Him tonight. Gary
August 1, 2008 at 7:40 pmNorb, I’m having trouble with my photo as well. Can you send me a PM? The photo up loaded, but when I click on the save it gives me an error message.
Thanks, Gary
August 1, 2008 at 10:36 amWOW! I didn’t know about this PR thread. I’m relieved to know there are saints on the front line of these battles as well. God’s richest blessings to you all for fulfilling the law of Christ (Galatians 6:2). I will concider it an honor to join you in prayer and to cast my burdens as well.
Please pray for strength, rest, encouragement and confidence for my wife. The last few days have been really rough for her. My latest motor function decline, the incomplete initial diagnosis, and the CIDP Dx yesterday have weighed heavliy on her. Also we’re looking for CIDP confirmation in the spinal tap next Wednesday; wisdom in treatment; and to begin treatment quickly.
Can we possibly get an Angel smiley icon put on the smiley tool bar???
Gary
August 1, 2008 at 10:09 amThank you LindaH and Rod for the replies.
Rod, I’ve heard Dr. Appel spoken of very highly (you’re in good hands). I’m now seeing Dr. Mosier and think I’m in good hands now for CIDP. Thanks for sharing the allergic reaction info, I will be asking that question now as well. I’m sorry though that you had to go through it for me to learn what not to do. You must have been either extremely alarmed or thinking “well, what else could go wrong”?
These postigs are a wealth of information that I’d like to be able to carry with me to the doc. Is there any way to print out individual postings or threads?
Linda, I’ve been keeping up with you through the other postings. Thank you for sharing openly. I have a tremendous supportive family, church and friends as a support group, but for some reason it does help too knowing you’re not alone in what you’re experiencing; talking with others who know what you’re going through. I am concerned that we haven’t heard anything back from Alice yet.
I pray God’s richest blessings on you both; healing, strength, peace, comfort, and encouragement.
Gary 😉
July 31, 2008 at 6:35 pmI had my 2nd EMG this morning 🙁 . Quite an unpleasant experience, but tolerable. Several “blockages”.
My original numbers were in the 40’s (some in the 50’s). I asked the neurologist running the test this morning how my new test numbers compaired with the 1st EMG. He said for the most part the numbers were similar; some of the numbers were worse.
The bottom line is that the CIDP Dx was confirmed. My B12 deficiency diagnosis, although correct, is not root cause of the demyelination. Seems whatever is attacking my myelin probably attacked my intrinsic factor producers as well. I knew by listening to my body that the B12 Dx didn’t make complete sense.
I wish I had continued to press harder for root cause of my demyelination.
Lessons learned for anyone following the Neuropathy Diagnosis Journey – 1) listen to your body and your feelings; 2) keep pressing for answers.
But that’s all water under the bridge now…time to move on…
I’m now pressing to begin treatment ASAP. My new BCM Neurologist (“much more experienced in CIDP” according to EMG Lab head) is advising that I hold off on treatment until after my lumbar puncture next Wednesday because treatments may affect the test results.
I think this latest wave of “CIDP attack” on my body is waning. I’m feeling not quite as poorly today as yesterday. So I guess if I hold or continue to feel stronger, I’m thinking waiting about a week to begin treatment is ok.
I did tell the neurologist though that I wanted to discuss treatments before Wednesday so we can choose my course of action and be ready to go next Wednesday afternoon.
Apologies for the length of this, but I think sharing our Journey could really make a difference for someone following.
God bless you all for this site and for posting, reading and replying.
Hoping and praying for a cure …
Gary O.
Would love to hear from y’all out there on treatment wisdom/experiences and effectiveness.
PS…Trey is workin on the photo. I thought I am a computer geek, but it seems I [U][B]was [/B][/U]a computer geek… 😀
July 30, 2008 at 8:37 pmI’ve tried to upload my photo and wanted to see if it works. Since I’m going to be a card carrying member, you might as well see what I look like.
This is a photo of me at my youngest son’s wedding a few years ago.
Is this the 1st photo with a tux? 😀
Gary
