Hey
I have had IVIG....I think it is safer than the meds. I can't have it anymore, as I do not have a serologically proven inflammatory condition. That is all I am saying. I think IVIG is the better option over some of the other stuff out there, but some of the other stuff, not all, is cheaper, so they put people on cheaper stuff.
IVIG is a blood product, and altho it is 'washed', you just never know if some prion gets thru....that said....it is the safest blood product out there, and that is why I think it is a BETTER option for many folks, over the hard core anti inflams that make you really sick.
I haven't had a sural nerve biopsy, so I really don't know if I have CIDP. I had the skin biopsy with positive results. I could have CIDP, it is possible, than I would beg for IVIG. I have 'idiopathic' (we are not looking for any more reasons) small fiber neuropathy. Plus 2 herniated discs, plum shot and calcified...that they can not get to, because of the 'idiopathic' small fiber. On the flip side, sural nerve biopsies damage nerves, and I don't want one, unless the genetic tests come back normal. If those come back normal, then I have a right to know if I have CIDP, as there is a treatment, IVIG.
I also had Lyme back in 1994, and assume I am cured of it and I won't live on antibiotics if they don't do any good. They are not good for the gut. I was treated with orals for 20 days in 1994 and 6 months of mixed in 2000. If that didn't cure me, it will likely kill me in the long run.
I am frustrated with incomplete diagnosis of people, jumping to treatments on folks who are not thru with diagnosis, and also, USING or EXPERIMENTING with drugs to see if they work when they do not know what is wrong with you to begin with.
You can treat a fever, but if you don't know the cause you can die of some illness while they are treating your fever....same thing with fibro, same thing with RLS and same thing with PN. There has to be a cause....acquired or genetic. Some stuff we do not know yet. That is fine, but if they have the means, they need to use it.
I think people need to have the option of making an intelligent decision, and often times we are asked to make huge decisions based on half the facts. Such as me getting 16 weeks of IV steroids....for what??? Later I get told it isn't autoimmune???? I needed that bone draining experience like a hole in the head!
If I have some genetic crud that can be tested for, well, fine, then here is the evidence, I rest my case, do the blood test....and I can live with the condition, what option do I have, and I don't waste any money on treatment for an untreatable condition, nor endure any adverse reactions, side effects from meds I do not need.
My insurance company paid over $1000 on Cymbalta and I took a total of 6 pills in two courses of that stuff. Some one paid for that in their premium, and it was uneccessary, so was the IV steroid.
I think a lot of docs, not all, but a lot of docs, are getting too many perks from drug companies and medical companies that come up with devices....I know of one who got $400,000 for 8 days of work per year...it is on the net. I know the institution the guy worked for and the device he invented and they hawked. Insurance companies are at the helm of the ship full of docs. My primary just quit because of it.
Buyer beware.
I am frustrated with the lack of up front diagnostics, the wasted money on off target treatment, not to mention the pain and suffering that folks endure when they have an incomplete diagnosis that is a fancy name for a symptom, not a cause of the symptom. In medical speak, it is called 'targeted exam' and 'target treatment', it is not wholistic, doesn't give the human being the whole picture before they make huge decisions on whether to take a potentially toxic drug or undergo a permanent procedure that could cause indelible harm.
I am not saying deny treatment to any one, I am saying....make sure you know what you are treating and that the treatment is appropriate, the risks acceptable and you end up better for it....not worse.
And there is a point, that some may find out we have an untreatable condition. That happens too.
What is frustrating me is the lack of imagination in Scandinavian naming and the assumption that every one knows that some ones son or dotter is their kid!!! For example....my kid 'Lars'...you know....I am Anders, and Lars is my kid...Lars Andersson....and he has a kid who is Anders Larsson....my lord!!! It goes on like that for perpetuity. And they have only 20 female and 20 male names.....it just goes on and on...They seem to have no identity crisis.
That is my speel today. I guess I got too long winded to get my point across. I do that, and get people confused.