I’m finally able to post
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November 5, 2008 at 11:25 am
😀
My name is Patti. To make a long story short…after getting sick almost 7 years ago and being told by numerous Doctor’s that nothing was wrong with me. The last MD I saw sent me to an infectious disease Dr. who checked me for MS, Lupus, Lyme ect..she said I had EBV and then added that there was nothing she could do for me. I requested a wheelchair and she said I needed to make myself walk, that EBV didn’t take away the ability to walk. I INSISTED telling her I had to have one that I was able to walk very short distances and my insurance needed authorization to pay for it. She refused, I cried and she said I needed anti-depressants. I continued to argue that this was not depression or being lazy. I was finally sent to a neurologist. He diagnosed me with CIDP.
He shook his head as he told me and said he wished he could have gotten to me years ago. I said so do I, I tried but nobody listened to me. -
November 5, 2008 at 11:59 am
Patti,
Welcome, your story breaks my heart to know what you have gone through.
I have GBS but others on the forum have CIDP. Ask your questions or just vent, someone will be here for you.
Shirley -
November 5, 2008 at 12:06 pm
Hi Patty. Im glad to see that you got a right diagnose…I too went through something simlar as to you but not as long to get my diagnose. Well the orgnial nero that diagnosed me with GBS in Sept 2007 then in March 2008 I became more weak and he had no clue on what was going on and then I found a nero that specializes in neromusclar diases in April 2008 and he diagnosed me with CIDP from just my history and my EMG test…now I am better than I was…he started me on IVIG treatments and a predozone treatment. I am done with the IVIG’s now I had them for 6 months and now Im gettn weaned off the predozone…So far so good…if you want to know anything else on what I went through just let me know…I hope you find a treatment plan that works for you….:)
Lindsay
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November 5, 2008 at 12:21 pm
I haven’t had the IVIG yet. I have read some good, some bad on it. He said something about having a nurse come out to give me something. Not sure if it’s something in addition to IVIG? Anyway, that starts next week.
I don’t like predozone. It makes me blow up like a balloon.
🙁Mainly I want to know if the treatments will help me walk again? I feel so tired and weak all the time now.
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November 5, 2008 at 12:29 pm
What I understand of what IVIG is its pure blood taken from donors…I have more information on it at home…I think your doctor is talking about a home health care nurse coming to your house to administor the treatment by IV…I dont really know what has helped me walk again if it was the predzone or the IVIG that is what we are tring now…I hope this helps
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November 5, 2008 at 12:47 pm
Patti, please to meet ya’ and glad you found your wat to this discussion forum. There is a wealth of information here and years of accumulated experience you can tap into.
You’ll also find a warm caring community of friends who will walk with you and even bear some of your burdens.
Hope you get your treatments started soon and that you get the doc orders for the help you need.
Welcome,
Gary
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