Hi everybody.
I have just joined and have recently been diagnosed with CIDP. Still trying to come to grips with the many facets of the desease. I am waiting on my medical aid to approve my IVIG treatement. But they are playing hardball and saying that they do not know enough about it, and that it is not under their chronic list.
Living in SA does have it's disadvantages.
Welcome Derek
That's terrible to hear Derek. Every countrys medical group and insurance group are different about approving "new" diseases and drugs. The US lags behind China and Europe on a lot of things too. And I too would have thought that CIDP has been around as disease for 20 years and would be on your areas chronic disease list too. I'm pulling for you.
Hi Derek,
Glad to hear from another South African - I thought I was the only person in the country with CIDP. I have been through the first of the treatments with good results. I too was worried about medical aid giving clearance but it was straight forward. My neurologist wrote the motivating letter and we got permission in about a fortnight. By the way, Polygam, which is what I used, is manufactured in Pinetown! it's used in quite a large number of treatments.
Good luck.
timmo
Hi Timmo, that is good news. Which Med aid are you with?
HI Derek,
I went to my neuro about ten days ago and did all the standard tests to see what the impact of the polygam had been - I was pretty sure that the results would be pretty positive. On the five point scale used to measure muscle strength I had gone from 2 to 4 in both legs and arms, although on the sensory side there were no changes whatsoever. I can live with the numbness and burning quite easily knowing that I walk far more effectively. I am now hoping that in March i will have a two day session on Polygam, with the support of Discovery, and that this will occur every three months and we review after each sessions. These shorter sessions involve a significantly stronger dosage than the original, but hopefully with a continuing improvement. Hope this gives some hope-Timmo
Hi Timmo,
That is great I am really happy for you. Keep me posted