1st Post – New Member JJM
AnonymousOctober 14, 2008 at 7:20 pm
Hello to all: I have been reading with interest since early July but posting today for the first time. I was finally DX’ed just today with CIDP. Symptoms started some 15 years ago with slow progression that finally put me in hospital from June 5 through 26. In the past 15 years I have bounced around from being DX’ed with depression, carpel tunnel surgery, two back surgeries, you name it.
Thanks to your many great suggestions & experiences I pushed for a university neuro consult as attending docs were Not on the same page.
Today’s EMG #3 at the Neuromuscular Disease Center of the U of I @ Chicago finally confirmed all of what I found to be true on these pages.
These folks really knew their stuff, were very supportive, and knew the terminology & experiences that all of you taught me to express properly in a medical manner. I will be coordinating IVIG refferals & treatment and concentrating now on getting as healthy as I can considering the length of time that I suspect I’ve had this. My balance & autonomic systems have been effected in addition to pain, numbness & tingling in legs, arms & head. (As my wife says, “same old stuff, different day”). She helps me keep it real and not too serious.
I look forward to being able to seek your advice & share experiences with all of you and truly appreciate the education that you have already provided.
(Jeff…) 56 years old & starting the 1st new day of the rest of my life.
AnonymousOctober 14, 2008 at 7:54 pm
Hi Jeff! So glad you came out of the woodwork and decided to joing us after reading a while in here! 😀 I too did the same thing. I think I read about two or 3 weeks and was getting ready to post and then I would chicken out! I would like to Welcome you to the site! We have a really good family in here with all caring and sharing people.
I too have CIDP and am going to Duke to be ruled out on a few things before they decide treatment on that. Hoping I won’t need treatment and they found my problem.
So glad the information in here helped you to find a path of getting diagnosed and I hope your first treatment begins a new life for you that you can enjoy forvever.
Yes! My husband has said the same thing too! Hurts my feelings when he say’s it but he really does not mean to say it. He’s just fed up with all the doctors that I have had to go to not getting any answers. One doctor just recently saved my life and to him I am grateful! But I have seen a few that had no care in the world. But we do have some good doctors! They are hard to find though. When you find a good one, you don’t let go!
Glad to meet you in here and I hope we see more of you posting. Let us know how you do! Hugs
October 14, 2008 at 9:25 pm
Welcome, my 11 y/o has cidp, we go to Rush. the Chicago liason, Shannon, has a fiance that also goes to uic and they love their doc too. Maybe you see the same doc. good luck and glad you have been dx. Now you can start your journey to feeling better.
Dawn Kevies mom
AnonymousOctober 15, 2008 at 10:05 am
SINCE YOU MENTIONED GOING TO U OF CHICAGO, YOU SHOULD COME TO OUR SYMPOSIUM FROM NOVEMBER 7TH TO 9TH, BEING HELD AT INDIAN LAKES RESORT IN SUBURBS. IT’S A GREAT WAY TO LEARN AND MEET US IN PERSON. GO TO MAIN PAGE FOR FOUNDATION AT [url]www.gbs-cidp.org[/url] FOR INFORMATION.
AnonymousOctober 16, 2008 at 11:36 am
Welcome out of lurkerville! I just left myself.
I’m really glad you are decoding your health imbalances and on the road to healing. It really helps to have a great Dr. Unfortunately we sometimes don’t know great until we have lower standards to compare to.
I hope your treatment helps to get to a level of functioning stonger and better than yesterday and today.
It’s good to have this site as a resource to help us understand healing, or not from others who have been walking the path longer than us.
Have a great day,
AnonymousOctober 18, 2008 at 9:21 am
Thanks [I]Everybody[/I] for your replies!
I Do Feel Welcome…:rolleyes:
While this is all still new to me, I am starting to understand the value of your support & what it means. I am going to my primary doc this morning with diagnosis “in hand” to jump start treatment, if I can.
My main problems right now are lack of balance, (feeling off center), and most usually neauseated & sick to my stomach, but I never throw up ???
It’s difficult to ride in a car. While I graduted to using a cane after the hospital, I find myself reaching out for my walker more & more in order to keep my balance. Has anyone had these type of balance & stomach issues?
I would sure appreciate any insight on this………………..Thanks, Jeff
AnonymousOctober 18, 2008 at 11:42 am
Balance has been a problem for me all along though it is much better now than it was. The AFOs help but also my legs are stronger and I can rely on them not to drop me on the floor as much. I also get nauseated – there can be different reasons for this with me. Some of it is the balance issue – some of it is my autonomic nerves were damaged and so don’t work as well.
Below is a great resources describing the variants of CIDP and other demyelinating neuropathies. It might be helpful to you at some point in figuring out what’s going on with you. Good luck!
AnonymousOctober 19, 2008 at 3:15 pm
Hi Jeff-welcome to the family. I am probably one of those Erin wrote about that have walked the path longer. I have been dx with CIDP for 8 years. Some days are good, some aren’t. Glad you have been dx’d and hope you can receive your ivig soon. I have balance issues, but have a cane right by my front door. I also have nausea issues, but meds help.
Good luck and tell your wife she gets a big hug from me for supporting you all these years.:)
AnonymousOctober 20, 2008 at 4:04 am
Boy do I hate those sick spells. Alot of diseases can cause that nausea and dizzy spells. I have Lupus, Thyroid and CIDP. With the Lupus, I ended up getting a Vestibular problem many years ago and that made me sick as a dog. Never threw up but felt like I was going to and driving or going places was just about impossible. I had a nerve inflammation right behind my ear. Considered a CNS problem that required Steroids. I got better but they too had to put me on Meclizine..mispelled for dizziness! Got better and then the thyroid messed up and the same spell hit me. Then too when my lupus flares up, I also get those same spells. A weird sick feeling and the only thing I can do when I get that way is lay down and rest hoping to get over the nasty spell. Not fun having, I know but once they get you on a right diagnoses and can do treatment those spells will normally ease up some. You still may get them, but the severity might not be as bad.
Good luck getting that diagnoses and I hope it’s a quick diagnoses with a good treatment option. Keep us posted! Alot of very helpful folks in here that give great advice!
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