JD

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  • JD
    March 20, 2021 at 10:28 pm

    I had my first vaccine shot 3 weeks ago. Prior to signing up for it I had asked both my neuro & oncologist if I should get it. Both replies were they recommended it. That’s what I went with, signed up & I didn’t ask for any referral. I filled out the form and wrote that I have CIDP. I also mentioned it to the MA that was administering the vaccine shot and he had no knowledge of GBS/CIDP.
    Never the less, no problems for me.
    I hope it helps. -John

    JD
    February 15, 2021 at 6:46 pm

    Thanks for chiming in. I am amazed at how many folks have the facial numbness since according to my neuro is “not how CIDP presents itself.”
    Perhaps it should be considered to be added to the list.

    JD
    January 7, 2021 at 12:12 am

    I am basically similar to DavidH with the major sensory symptoms. Lots of the good old tingling, burning, numbness, is it hot/cold(?) occasional electrical shocks. At least I can taste about 20% of the things I eat. Salt, sweet & bitter is what I can taste.
    Mike & others the facial numbness isn’t good, is it. The eyes being numb is especially annoying to me.
    I work hard to keep myself busy as it helps keep my mind off of all the annoyances. Constant nerve harassment 24-7. Sometimes I can’t tell if my feet are burning or freezing. But they keep walking so I’m so very grateful for that.
    Wishing everyone the best.
    -John

    JD
    December 2, 2020 at 4:35 pm

    Hi Jim. (John up here in Acton):
    I have been seeing Dr. Lewis at Cedar.
    As evident in all the various posts, is none of us are alike symptom wise. This is one tricky disease.

    I had PE during my 2nd stay @ Henry-Mayo and it allowed me to get well enough to walk again and head on home. Then the most serious of relapses at Scripps for almost a month. One of the Oncology doctors there set me up with a regiment of Retuxin treatments and that really had me felling better and on my way home in a matter of a week. My current physician at Scripps, while I asked for it, has been extremely reluctant to use Retuxin. I am walking well and fairly stable except for the occasional drunken stagger. I believe Retuxin is for the severe, hence my not receiving another dose.
    I should probably start a new thread with the whole story. There are a few oddities beginning around 2011. I will try to post this evening.

    Thank you Jim for your in-depth knowledge and information you give on this forum. It is indispensable for the inflicted.
    -John

    JD
    December 2, 2020 at 1:49 pm

    I have not used Igenex for testing.
    The first test was done when I had my first lumbar puncture and came back negative. I had this done right after I was admitted to the hospital and prior to any GBS/CIDP treatment whatsoever. The importance of this is IVIG can & will mess up the results. I had it done again when I was re-admitted due to a relapse a few weeks later. Then again when I had my 2nd relapse and was readmitted, this time to Scripps-Mercy in San Diego. Infectious disease doctor used blood this time. They have what is called a titer(?) blotter or some such. There are 10 blotters and they count how many, if any, come back positive. The tests results were all over the place due to IVIG being administered. The doctors gave me no treatment for Lyme. I take that back, I did receive about a week of I believe: doxycycline VIA oral while in Scripps.

    JD
    December 2, 2020 at 12:53 pm

    Thank you folks for the feedback so far.
    Mike, my story is extremely similar to yours.
    I was tested for Lyme 6-times actually. Living in California Lyme is not common but I had a target rash a few months previous that was exactly like the Lyme target rash. One of the doctors I saw (non-neuro) was a Lyme specialist and said he was doubtful I had Lyme. Also my neuro at Cedar’s said no Lyme.
    I also have had extensive testing of course. My proteins came back way off using the lumbar puncture. Also my reflexes are all but non existent, especially in my knees.
    On a funny note, I gave one of my neuro doctors a small 5-pound sledge mallet with the words “GBS-CIDP Reflex Hammer” written on it. We all got a good laugh out of it.

    This disease can wear on a person. But we’re a tough crowd!
    -John

    JD
    September 21, 2020 at 2:30 pm

    Hello Sandra & sorry for the late reply. Not sure if this will help out but here is more to my story.
    Oct 2016; I woke up one morning and my hands were numb. I had no idea what was up. I immediately thought stroke so I called my GP. He got me in right away and sent me out for a CT scan. No stroke shown. My GP had sent me to a neuro doctor and he did a preliminary and asked me to come back in a week if no improvement.
    I am home and over the next 3-4 days my hands were not working properly and feet getting numb.
    I could not fasten my pants, was stumbling around like a drunk and obviously concerned. I had taken myself off from driving, so I was getting a ride to the office.
    After about the 5th day at work I almost fell over and head/face was getting extremely numb as well. I figured there was something serious going on so I had an employee take me to ER. My physical condition was deteriorating rapidly. Crazy fast.
    This was the first of 3 ER trips.
    So, where I’m going with this is I seriously believe me heading to the doctor so early was a tremendous benefit in my outcome and current state. Of course I did not know this at the time as I had no idea what was going on. I got lucky and made a good decision.
    I am still on IVIG. Down from 90 grams every 3-weeks, to 60 grams every 6-weeks. How is it working out? The jury is still out on that really. Mornings are rough as all my tendons are stiff as a board, feet, lower legs, hands, forearms, face, eyes & tongue are numb and burning. After 600mg Gabapentin ( I take 1500mg daily) and I walk & stretch a bit I loosen up.

    I really hope your body settles down. I am still waiting for that. I told nuero that I can live with what I have. Please don’t let things go further down hill. I have my fingers crossed.

    Jim mentions above about going to a center of excellence. I go the Cedar-Sanai Center of Excellence in Los Angeles. I also still see my local neuro doctor. I was glad to go see the Cedar doctor for a 2nd & well educated opinion. In truth both neuro doctors did the same treatments. But it is sure good to know that my local neuro doctor and myself did the right things.

    I may still put my whole story in it’s own post here soon as it’s kind of long and has some screwy twists prior to the onset CIDP.
    Good luck to all. I think we all kind of need it.
    -John

    JD
    September 18, 2020 at 12:26 pm

    Sandra: I received an email with your response but the post is not listed here. Post #117730.
    I wanted to add a few things to my prior post and will try to do it on my break today.
    -John

    JD
    September 14, 2020 at 12:39 pm

    Hello Sandra. So sorry to hear of your relapse.
    I have been reading the stories on this site since my first onset Oct 2016, but this is my first post. I have been contemplating posting my story for quite a while & I will do it in the near future as we all seem to have so much in common, yet all so different. I am a 64 year old male and was 60 at the first onset.

    Early Oct 2016, severe numbness and uncoordination, went to GP, then 10 days later went to ER as I was going downhill fast. They figured I had GBS since I had a flu shot 10 days earlier. Received IVIG treatments then sent home.

    Early Nov 2016, relapse. I knew it was hitting me hard again, so back to ER I go. Gave me plasmapherisis then loaded up again on IVIG. So here is my first relapse.

    Late Nov 2016, relapse. This time I was in San Diego and my daughter is a physician at Scripps-Mercy so she hauls me in. This time I’m in for close to 4 weeks. GBS does not relapse like this, plus my symptoms were totally peripheral (hands, arms, legs & feet plus I could not walk nor stand on my own) so a ton of tests and CIDP is their diagnosis.

    My wife sets me up at the Center of Excellence at Cedar-Sinai in Los Angeles. I stay on IVIG for another 4 months at home. The neuro doctor removes me from IVIG treatments for almost a year.

    May of 2017 I feel really bad. Another relapse. Numbness, burning, trouble walking etc. So back on IVIG again every 3 weeks. I am still receiving them. Now though every 6 weeks.

    I don’t know if any of this helps you Sandra. But as a (good) side note: I am in not too bad a shape. Especially if you look at me. I drive, can ride a dirt bike, can walk a couple miles and look fairly normal to most folks. Except for the occasional “drunken stagger” you wouldn’t know I am ill. But I will say that my hands don’t work properly, they are extremely numb and my feet are the same way. I have a lot of facial, eye & tongue numbness as well. The head & facial issue baffles my neuro doctor at Scripps as it does not “fit the criteria” of CIDP.

    I wish you and everyone else here all the best. One of my best mental treatments is to keep myself busy. It helps a lot. Keeps my mind occupied and off the CIDP issue.

    Take care everyone. And Jim thanks for all you do for this site and the folks posting.

    -John
    Acton, CA