Reply To: Time of decline

June 17, 2019 at 11:48 am

I was diagnosed in 2016, I could not feel my legs below the knees. After three years, going on four, with Gammunex C, I can feel down to my ankles. My symptoms were not that noticeable because they were being masked by advanced degenerative disks that started 20 years ago when I was 40. I have lost all my disks in my lumbar and cervical (neck). In August of 2018, they rebuilt my back from under my shoulders all the way to the end of my spine. That isn’t that germane, except that I no longer have the masking and can now feel what the CIDP pain is. Mine comes after 12 hours of IVIG, and it is severe for three days, incapacitating. However, about five days out, I can look forward, generally, to four weeks of up time before I go it again. After almost four years of this, I am sick of being sick. However, the hope is, I can now feel my ankles, cold on my feet, where I could not feel anything below the knees before. Gammunex C, made by Griffols, is the only formulary my provider, the University of Colorado Health System, will use. I found out that there are many clinics that will use no other formulary, but it really depends on your insurance, as it is one of the more costly.

To the original question about how fast decline happens: GBS happens fast, but there is great hope there as it does not last after treatment (not saying it won’t come back). CIDP, however, can take years to become critical. I was critical, I had no pain, in fact, I had no sensation at all. I would estimate that took about two to three years to reach that level. I believe this is an individual thing, how fast, but those of you with rapid onset, if your Neurologist is saying CIDP, and won’t consider GBS, change providers. Same thing if they won’t use Gammunex C.

Just food for thought.