I was developed CIDP symptoms about ten months ago and was officially diagnosed recently. Started out with numbness in right foot and spread to left foot and both ankles. Now I'm feeling some slight numbness in left calf. As the numbness is in "spots" on my feet, I am still able to walk. Any comments about progression? I have read that in some, there is progression but in others there is not. Seems very unpredictable. My balance is terrible however - cannot shower (have to get in tub) for fear of falling when I shut my eyes. Dark and unfamiliar places make the balance issue worse.
I'm having a hard time getting insurance to pay for IVIG. The only doctor who recommended it doesn't take my insurance. Two questions - Does IVIG help a lot? How soon after diagnosis does it need to start? I can change my insurance plan in January and get the therapy. Meanwhile, I'm looking for another doctor that takes my current insurance.
I was diagnosed with CIDP in 2008. Went through many doctors and many diagnosis until I finally ended up in the ER unable to move from the neck down. Did 5 days IVIG, and then went to Rapid Rehab for 4 weeks. Still could not walk when I went home. Took 6 months to walk, and 6 more to be able to drive.
Now receiving IVIG every 4 weeks, and I can only say that it saved my life. Took time, and I still cannot feel half of my feet (balance is still off), but doctor says that nerves in feet are the smallest in the body so they probably will not come back.
Can't say IVIG works for everyone, it doesn't. All I can say is that it helped me. Try talking to your doctor - my doctor ad to fight for it! But once they showed I was doing better, it made a huge difference. Hope this helps. It is tough - changes your life forever. But you can take part of it back!!!
I was diagnosed last year after ignoring the 1st symptoms which are almost identical to what you describe. Ignoring the first symptoms thinking they would go away only made matters worse in my case. I ended losing a significant amount of strength in both my legs and arms. So the sooner you can get the treatment the better to slow the progression. In my case my neurologist prescribed a loading phase of IVIG 6 treatments once a week for six weeks which I noticed did help. After the loading phase was done I started on 30mg of prednisone and 50mg of azathioprine a immunosupresent. Every month for 3 months I lowered the prednisone by 10mg and increased the azathioprine by 50mg to the point where I now only take the 150mg azathioprene in conjunction with another round of IVIG 6 treatments 1 every 4 weeks for which I have 2 treatments left. I'm know doing much better than I was prior to being treated. I just want you to know that this treatment has worked for me but may not work for all as we all respond differently to different treatments. I hope you get your treatment soon so you can start to heal as you will notice improvements in baby steps it's a slow healing process.
Thanks for the info. Will look up the sites you suggested. Very frustrating!
mdolich said:
It takes time, everyone is different in their symtoms, treatments and recovery. I was first diagnosed GBS and was given 10 rounds of IVIG over two months (5 rounds each month) and had physical therapy for six months before I was able to walk again. I was fine for a year and a half. Then I started having relapses and was rediagnosed CIDP. I now have to get 80g of IVIG every three weeks for the rest of my life. But it's worth it to be able to walk again.
To me IVIG means the difference between Walking or a Wheelchair, and I prefer walking!!!
As far as insurance goes, contact Jennifer Jaff. She is the founder of "Advocacy For Patients With Chronic Illness." They help with insurance problems when it comes to treatment. She was a trial lawyer and a law professor. Here is her website.
Also IG living might be able to help. They have a patient Advocate, it use to be Kris McFalls but she is no longer there. I'm sure they've appointed a new patient advocate. If you go to my profile and look for the post about "IG Lving magazine" you'll find the link to them. Get their magazine, it's FREE and it's full of great information.