Hello All!! I’m now posting
AnonymousAugust 6, 2010 at 12:55 pm
Many of you have already heard a lot about me from my mother, rho_mcc..im not sure what her name really is lol.
Any ways i finally got my account activated today, so now i can post.
My Name is Ryan and i am now 21 and soon to be 22, and i was dx in Dec. of 08 with this terrible disease, i have gone through some of the worse hurdles that anyone can ever go through.
Here is my story from the very beginning until now, with a little bit of scrunching together times of this disease and leaving out parts of it too.
I ended up with getting the terrible symptoms of CIDP when i was in my fall semester of my sophomore year at Central Michigan University. I started in October of 2008 of losing my feeling in my feet, and then in my hands. i also started to have really bad pains in my calves, kind of like i tore muscles, I was pretty active running and working out almost every day and also playing racquetball a few times a week so i thought maybe that i tore something when doing that. After about a week of that my legs were pretty week, almost to the point of where i couldn’t get out of bed and where i couldn’t clime up my stairs. Of course i didn’t go to the doctors for any of this because i didn’t think anything was really wrong, and oh i was wrong. I was on my way to my calculus class and i fell and could barely get back up. So i turned around and went back to my room to get my keys to go to the hospital. They ran some test and i didn’t have any reflexes so they knew something was wrong but didn’t know what yet. I waited until after exams and went home, and my mom got me in with my family doctor and she was terrified because she thought i had a tumor or something. She ran test like blood and also an EKG, she also had me go to my first neurologist and he did a spinal tap and blood test and an EMG right in his office. He had a few theories one of them being CIDP. He called me when the test came back and had me come in; he told us that the test came back positive for CIDP. He didn’t know much about it but what he knew was all found on Google, so not very helpful or knowledgeable about it. He set me up with IVIG and told us that it would work. So, I had 90mg of IVIG every day for 3 days. During these 3 days my bilirubin spiked up to 20 when it should be a 1 or 2; this turned me a pineapple yellow haha. I was put into the hospital where i had more test ran on me then i wanted. EMG, EKG, an ultrasound, a catscan. Blood test up to the wall, i lost count after 15 a day, I had almost every test ran there is haha. I got out of the hospital after about 3 weeks; I also met one of my current and 2nd neurologists here. I was then sent to a rehabilitation hospital for a month. (The food got old fast lol). I continued with IVIG for about 4 months within that time I was sent back into the hospital because I got terribly week, so much so I couldn’t walk at all or barely turn over in bed. I ended up getting my first set of Plasmapheresis here 5 times every other day. I had to get a catheter put in my neck for this; it was the worse pain ever. I spent 2 weeks in the hospital and then was sent to the rehabilitation hospital again for 7 weeks. I got out still in a wheel chair and still couldn’t move very well, and oh did I mention still doing IVIG which never worked? Lol. I met with a neurologist that specializes in CIDP and ALS, his name is Dr. Richard Lewis our of Wayne State University in Detroit, he was a savior in half, he took me off of IVIG and put me on Plasmapheresis and 80mg of Prednisone, this worked to a point for a about 2 months I started using a walker for a little bit but also had to use my wheel chair. If you haven’t guessed yet I was basically paralyzed throughout most of this. I saw Dr. Lewis again in November of last year and he took me off of everything for a little while. I saw him again in January and I talked him into letting me do Cytoxan (chemo). I just wanted to get better so I would do anything I could. After my very first treatment I started seeing drastic improvements, walking with a walker again and then after a month in a half I was out of my wheel chair and I haven’t looked back yet. so as the treatments came and went I ended up walking with a cane and now I am done with Chemo and I walk with a cane still sometimes because of my balance issues but I only where one AFO and that is on my right foot, I don’t have very good movement in it yet, I just had my orthotic guy order me a Blue Rocker!! It is amazing I don’t have to use a cane at all!! And I just tried running yesterday at my last day of PT and I could!! Not very well but still after not running for about 2 years now it felt amazing. That’s about all. My hands also shake pretty bad and I fatigue easily and also have terrible nerve pain everyday all day.
Does anyone else get the shaking hands or nerve pain? If so what do you do about it, I have just been fighting through it
AnonymousAugust 6, 2010 at 2:37 pm
Yes my friend, shaking in the hands especially if I am fatiqued. I have experienced high levels of nerve pain in my hands, knees, and feet. Hope someday it will forget where it belongs and just go away. Hope you continue to improve daily, and that someday you can answer some of these questions for someone else. Good luck and God Bless.
AnonymousAugust 6, 2010 at 4:39 pm
Good going in regards to recovery! The pain in your feet will probably ease as time goes on; mine was really bad, but lessened in time. Glad they dx’d you in time for the treatments, and that your doc tried to learn what to do with a CIDP patient. You’ve been through a lot, but you’ve made a lot of progress since then. You’re young, and your whole life is ahead of you, so do everything you can with eveything you have. Blessings!
AnonymousAugust 6, 2010 at 8:03 pm
HAVE been an inspiration to ME this past year! I don’t think I could explain why? But YOUR and your MOM’s Courage has been inspiring to me!
It’s helped me not to go down into the pits of self-pity of wimp-ness.
It’s not easy to ‘recover’ at any time? But, I know that you’d gotten it BAD and you got back at it well, ‘Badder’!
Shaking hands? What are your ‘metabolic blood panel levels’? IF you are low on calcium, magnesium and Vite D [which you likely are?]. I’d almost bet you one mean chocolate soda about it! Start to ask about supplements and which ones are best. Neuro pain meds suck these things outta you as they would one with epilepsy. As most of the pain meds we get are from that field. Just ask for and get a copy of the ‘report’? And see where the asterisks [*] are. Those indicate either high or low #’s, but some key #’s can be marginal and not warrant the [*].
Again both you and your mom are some of the braver people I’ve met here! You’ve fought a good fight and are winning! Keep it so!
August 7, 2010 at 4:39 am
You have just shared a poweful story full of strength, courage and hope!
I admire your sense of humor too.
Your wonderful Mom sent us reports about you, but hearing from you first hand confirms what a great example you have set for the rest of us.
You as well as others on this forum who have shared their stories have inspired me along the way and for that I am grateful.
I want to offer special prayers for You and your Mom.
BTW I have been taking at leat 600 mg of alpha lipoic acid also known as R-lipoic acid along with acetyl-L-Carnitine. The best price and quality I found was at Best Vites nutrition store online. I comes in a combination capsule.
At [url]www.clinicaltrials.gov[/url] they are doing a CIDP trial with 1200mg of alpha lipoic acid and I did that for a while, but now I only do 600mg of R-Lipoic Acid along with the 2000mg acetyl-L-Carnitine combined in the 4 capsules.
I started that regime before I even got diagnosed and when I started treatment the nighttime pain I felt left after 3 months and hasn’t come back.
AnonymousAugust 7, 2010 at 9:25 am
H.i Ryan Know that i had prayed for you and your mom. The recovery you have is awesome. I had GBS in Oct of 07. I still have progress in the healing of my feet issues ,I think I may live with it and thats the way it is. I cant complain from where I was to where I am is still better.
God blesss and take care
AnonymousAugust 7, 2010 at 2:52 pm
I am Pam from MN who spoke with your mother at length when you were at your worst. My only grandson is named Ryan & I prayed for you every night, just for the strength to get through this, to keep fighting. Like you, I got hit very hard & very fast, I know what you mean about being almost paralyzed, totally dependent on others for your care. And I know all about the horrible pain, the first two years of CIDP I was begging my husband & my neurologist to chop my feet off, cried so much because of the unbearable foot pain. My hands shook terribly as well, but I always attributed that to the 1,000 mg of solumedrol I was given weekly.
IVIG, PE & steroids did not help me. I finally was given 9 months of cytoxan, which did arrest my CIDP. I still need AFOs on both feet & do use a cane half the time. Indoors I don’t need one, or on even surfaces. I take 1800 mg of neurontin (gabapentin) for the nerve pain, which is mostly in my feet, some in my hands. I am thrilled you have done so well, remember that once CIDP is arrested you can heal for up to 2 years. But if the nerves have any axonal damage, you will not get that back. If you can run, even a little, you are ahead of me. I do find the fatigue to be the worst residual though, I seem to need at least 10 hours of sleep at night; not sure if I ever really feel “normal” in that regard. But after 8 1/2 years of CIDP, I have come to a certain acceptance of these residuals. But you are so much younger, I hope you get most everthing back. It was so nice to hear from you finally!
AnonymousAugust 8, 2010 at 9:09 am
Every long journey is made up of a lot of many little steps. I think you are finding that out. Sometimes the smallest improvement is the reason for the greatest smile, like the day you can handle your fork yourself, or the day you can walk down the street yourself….. you know what I mean.
Those steps come slow. but they will come. Keep your confidence high and your courage strong. Like Pam said, you may not get everything back, but cherish what recovery you do get. I know you will always remember where you came from, and your journey is an inspiration to us all and for others.
Keep it up !!
AnonymousAugust 8, 2010 at 9:16 am
Please continue the posts. It is an inspiration to us all and every step of recovery you make is a great help to us. We don’t all feel the same pain as you, but we do all know what it takes to go foward. God has a purpose in life, and he has taught me humility in mine. It was then that I could go foward in all I am able to accomplish. We will continue to keep you in our prayers and thoughts.
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