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Hi Dana, I am newly diagnosed with CIDP. Awaiting a 2nd opinion. I am in my early 70s and in good health, and now have this. I had hepatitis B in 1972. It resolved. I am hesitant to use any drugs that affect the immune system because it supposedly could reactive it. They have me set up for IVIg infusions which I haven’t started yet. Because of my age they don’t want to use steroids. I have so many questions about my diagnosis but I’m glad I found this forum
Thanks for sharing your story and all the detail! Very informative. And thanks for replying to mine. I am approved for IVIg but have put it on hold until I get another opinion. I’m worried because the neurolgist said not to wait too long. Because of my age, he doesn’t recommend steroids.
I have a lot of questions to ask during my second opinion visit.
Even though I’m older, I have exercised all my life and am in good health. I always feel better after PT.<p style=”text-align: left;”>Thanks for your reply Dave. I live near Austin Tx is impossible to find a PC here much less a neurologist. My second opinion is with a center of excellence UTHouston I found on this website. Two months after I got sick- the numbness started. I saw a PC Dr and my reflexes in legs were barely there. So all the blood tests for idiopathic neuropathy started and all normal. He referred me to neurologist.
I really think could have had GB and didn’t get over it. Then my issue. became chronic.
I literally woke up one morning so sick and I had multiple issues with my knees & legs with it. I had to be driven to gastro dr because I was so shaky.
I read that about protein in CSF also.
They only positive test I got from all blood testing was that ganglioside. And the in-office nerve tests indicated neuropathy. So here, almost 7 mos later, I am going to PT, which helps. Need toe exercises too since they don’t work well and are really numb. I feel lucky because I don’t have any pain</p>
What an amazing story! I am newly diagnosed. Getting a lot of good info. Thanks for sharing your story.