My CIDP Story so far…
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March 30, 2017 at 7:42 pm
Hello all, I am a 2x (thought it was 3x) survivor of GBS and the 3rd instance I was diagnosed as CIDP. My symptoms presented as a horrible back ache running down both legs. Quickly progressing to muscle weakness and loss of muscle control and strength. On September 25, 2016 the back ache began, I thought I had slept wrong or twisted wrong…traveled to California from Nevada to my parents house to help them. On Saturday the 26th, the back ache got worse and I started having difficulty walking that evening and by Sunday morning the 27th, I was needing assistance in standing up. This mimicked the very first instance of GBS in 1993(ish). I went immediately to ER and was in the hospital for a week getting IVIG for a total of 5 days after my Nevada neurologist hung up on the California ER doctor 2x. Released from hospital and returned home, barely able to walk and with profound weakness on my left side (am left handed) and I had horrible burning sensation down my left leg nerves. Saw my neurologist to follow up in November and in of December 2015 began PT and had another 4 days of IVIG. January of 2016 during a follow up again with my neurologist, weakness and regression was noted again…so again they ordered IVIG…was supposed to happen within days but due to Insurance companies and a crooked neurologist/pharmaceutical rep treatment was delayed until April 2016. After which, my neurologist “fired” me as a patient. It took until November 2016 to find a neurologist in the Northern Nevada area that would treat me. Luckily he ordered a lumbar puncture (previously my neurologist did not order one) and bunch of blood tests. The LP came back with elevated proteins and blood in the sample (they said it was a difficult stick even with the x-ray guiding the LP). My neurologist ordered IVIG and end of December 2016 I finally had treatment again. During 5 days of treatment that he ordered, I received more IVIG per day than when the previous Dr ordered the treatment (I know its based on weight but was shocked that even after loosing close to 80lbs I received MORE medicine than before). I seemed to get better, people said I had better color in my face, I wasn’t so “greenish” looking, but my strength and stamina had still not returned. Tuesday, March 28th I received a one day “top off” treatment of IVIG. It wore me out…and brought on an infamous IVIG related migraine…Today as I write this, I feel less exhausted but still tired. I hope the strength and stamina return…I have not been able to work since September 2015 and it’s driving me nuts. I hate feeling like this, that I am not productive when just washing the evening dishes wipes me out. Thank you for everyone who has taken the time to read this long rant. Hopefully I can provide help to other people with this. If I can answer anyone’s questions please feel free to message me.
Steve
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March 30, 2017 at 9:14 pm
Hi Steve, Sounds like you had RGBS that morphed into CIDP. Have you ever tried Plasma Exchange (PE) following a flare-up? Some (myself included) believe this treatment should precede IVIg so the bad anti-bodies can be purged before starting IVIg.
Most doctors/neurologists think that since a proper PE requires a “port” to move and filter the blood in volume… that many people would not want to undergo “port” procedures. Unfortunately for me, this thinking resulted in my having substantial axonal damage. When I think back to 2008 and how the neurologist phrased my treatment options, making me choose IVIg over PE, I want to go back in time and select PE. I would be walking today if I had PE then. It wasn’t until 2009 that I was finally given PE by a neurologist at a Center of Excellence. I felt improvements within 3 days following my first PE. A year or so later, I found that PE put my CIDP in remission.
Not everyone improves with either treatment option and some don’t respond at all to one or the other. I think PE gets a bad rep from neurologists who are less experienced treating CIDP. You might want to discuss PE with your neurologist next time you have a flare-up.
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March 31, 2017 at 1:02 am
I had asked my previous neurologist about PE and he was not even receptive to it at all. I intend to ask my current neurologist about it when I see him in 2 weeks…tired of the IVIG ups and downs…
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March 30, 2017 at 10:08 pm
Wow sounds like it’s been a long journey. I’m new to CIDP and haven’t started IVIG treatment yet. I do know the first round of dosing is supposed to be a loading dose of 2g/kg, and follow up is half that. I have heard that a lot of doctors undertreat CIDP (not enough IVIG or steroids, not long enough, or both). I hope you find some answers or options to try soon.
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March 31, 2017 at 1:17 am
Regarding side affects of IVIg, you may find some interesting info here:
https://forum.gbs-cidp.org/topic/odd-side-effect
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