Now That I Have Been Diagnosed...

I really hope this works...most post I have found for the group is rather old but here goes.

I am reaching out and decided to join because I was diagnosed with CIDP in June. My symptoms showed up in the last 2 weeks of May, gait problems and increased to the point where I have dexterity issues in my hands, the loss of strength to open anything, hold a pen, button a shirt or zip and button pants.

I am currently about to go in on my second IVIG treatment. Everything that could go wrong, did. Allergic reaction in the first 10 minutes, itching at injection site, anaphylactic, etc. I have to be monitored closely, treatment stopped and given Iv Benadryl because I am allergic to my treatment. I haven't been given prednisone. I also have very serious allergies and use prednisone as a defense against my allergies. Doctors have informed that you should only use prednisone for no more than 7 days at a time.

Needless to say, because I have already had my share of Prednisone orally. I am given Solumedrol IV. It's better for the allergic reactions. But I still have the worst symptoms, fevers, vomiting, hospitalized for dehydration. IVIG treatment dehydrates you! I went through 2-4 gallons a day.

I am glad that I know what I have but there isn't anyone around me who understands what I feel and why I feel this way. I know I should be positive, I do pray for the great outcome of normalcy again. But I need to speak with others who understand me, how I feel and what I am going through. When I tell people that being diagnosed was like being dragged through all the painful memories you've ever had over and over again, I'm talking about the electrodes outer and inner shocking, then people try to sympathize rather than say "stay positive, don't be so down"

Today, July 29th 10, my doctor says that he wants to try a nerve biopsy. Troy and his Achielles tendon anyone? Thank you but no thank you. I have suffered in silence with silent tears through the nerve electrodes, the needles, the IV, the hospitalization. But I refuse to suffer through that. I am no Troy and I already walk with difficulty. You will not make it worst. Anyway I am here and you can reach me here.
lostmemories lostmemories
22-25
4 Responses Jul 29, 2010

I feel for you. I really do. I am currently in the hospital. Just had my last dose of Iv ig. Tomorrow they're sending me to a rehabilitation hospital to try to get my strength and up to go home where I can take care myself. I had the nerve conduction test, so I understand about the needles and the pain and being so tired of all the test and people not understanding exactly how you feel.
I'm scared of the physical therapy because I am so weak.
I understand what you mean about the use of your hands I can't hold a fork barely hold a ink pen.
It's so scary and the worst part is not knowing what the future is going to hold ,if you're ever going to get better. My heart goes out to you. keep positive,and I know everybody tells you that , and it's hard to do. it's hard for me to do. But we have to stay strong and we have to keep working at getting better.
I will keep you in my prayers.

I know exactly how you feel I am 25 I got diagnosed at the age of 19 and I am still at exactly where you are I feel so alone like no one understands what I'm going through I just recently got diagnosised with hereditary cidp so there for all the ivig treatments steriods were useless and just as you they were horrific I was also allergic to ivig I stay in the doctors offices I stay sick and all to know there maybe no treatment for me this is the first time I have stepped out and talked to someone else about my problems so if you would like to talk sometime know I'm here

Are you still available to talk about CIDP? I would be very interested to share information. I started having problems in August 2010 and have just been thru all the tests which indicate I have CIDP.<br />
Get in touch if your still interested.

YOUR PROBLEMS SOUND JUST LIKE MY STEP DAUGHTER. YET SHE STILL HAS NO DIAGNOSES. SHE IS 10 NOW AND HAS HAD 2 ATTACKS SINE SHE WAS 5. DOCTORS KEEP TRYING TO SAY SHE HAS BVVL BUT IN DEC THE TESTING WILL BE DONE TO PROVE SHE DOES NOT HAVE IT I'M SURE. WE ASK THE DOCTORS ABOUT GBS OR CIDP THEY WERE CLUELESS, BECAUSE THEY SAID THE TESTING CAME BACK NEG ON THAT DISEASE. NO TEST TO CONFIRM, HOW STUPID ARE THEY. ANYWAY I BELIEVE THIS IS WHAT SHE HAS BECAUSE SHE HAS GONE THROUGH THE SAME AS YOU PLUS SHE WAS PARALIZED? AT ONE POINT AND HAS RECOVERED FROM THAT AND A VENTALITOR 24 HOURS A DAY. HER ARMS ARE STILL NOT NORMAL NOR HER HANDS BUT AT LEAST SHE CAN MOVE AND WALK ON HER OWN.