Your situation was far worse and you were lucky to get the IVIG.
And, yes we should be better informed about what we are being treated with! It is really up to US, ourselves to be our own advocates about the aftermaths of medications and therapies. Unfortunately, at times, such as yours, you aren't in a situation to get or become informed!
My own situation was what was called a sub-acute onset...in that it was 5 weeks from the time I got numb toes to being admitted into the hospital [where they really did nothing].All the hospital docs could surmise was that something was 'going on' and it took a few 'second opinions' [over a year of doing] and heaps of tests, MRI's and nerve conduction studies, not to mention that old 'spinal tap' to get diagnosed and IVIG. I too, was healthy one day and a few weeks later needed help getting out of any chair! Not to mention bed or other places. The pain meds helped some, but also knocked me out to the point where I was sleeping 18 hours a day.
I understand that the 'system' in Canada is a bit harder to navigate at times than in the US. I also understand your frustrations! Because during the times I was getting other opinions, things were really getting worse. At that time? I was not at all internet wise, either. Not many 'books' out on the subject, you know?
Can we declare peace and share info instead? Having such a chronic disease is really a mess-up to any life you thought you would have. But, it proves your mettle and that you are a far stronger person than you realize.
's - j
My onset followed a long bout of pneumonia w/3 courses of anti biotics... stuff started less than 2 months after.

Yes,dahlek,lets be friends, with illnesses like ours, who needs enemies!? I feel really bad for you, that it took soo long to figure out what was wrong with you, that would have had to have been so emotionally draining! And yes, those awful spinal taps! Yuck, I wanted to cry like a little girl, did you get the banging,throbbing,puking,disgusting headache after? Did you have to go thru all of it alone, or did you have a strong support system? I have had many sad things happen in my life, but I am strong enough to survive, if you ever need to let it fly, pick me, I will be here for you! Hugs from the prairies.

Havent been on the site in months cause been very sick with autonomic complications of my PN - however, just trying to catch up....

PrairieMary - yes, the IVIG is a life saver for GBS - and is usually used in treatment as a lifesaver - CIDP, etc... is not as life threatening and usually requires constant proof of need, imrovement, etc....

I am no longer getting IVIG - long term it proved useless to me unforutanely, and I'm becoming increasingly disabled... but it works for many (my diagnosis has changed to genetic PN also)

Being a fellow Canuck just displaced - I've found all my relatives get very good care up there! sometimes you just have to wait for non-emergent doc appts. - but you do get good care... In fact, if I still needed the IVIG I couldnt get it due to budget cuts etc. and would have to do without.. there are unfortunately many folks in this situation right now in this country.... It depends on your insurance etc....

Hang in there

Yes,kmeb,you are so right about the healthcare we canadians have, though many,many people complain about it.I had no problems at either of the Hospitals I was in, then when my daughter got cancer 7 years ago, she got excellant care, at all 3 Hospitals, and when she spent her final days at pallative care, she was treated with love and much respect, as were our family. Some have said she got such greaty care because she was just a child, but I beg to differ, she got great care because her caregivers cared.It was such a horrible time for me, but every nurse and doctor made it so much easier for us, I wish everyone could get such great care.

I receive IVIG and hope that I can stay on it. It has made a difference for me. I have read that they 'wash' it and that is is very unlikely to have mad cow. (Now this is assuming you trust what our government tells us, and I admit, I have my qualms).

Transmissible Spongiform Encephalopathy prions have been found in aquifers. We created a huge mess with feeding cattle to cattle and now it is in the natural cycle. Chronic Wasting Disease of deer and elk happens to be the most prevalent in animals grazing where cow dung is. I think it is a matter of load...how much of a load of prion you get, not IF you get it. I wonder who among us has no prions from any source, wild meat, cattle, sheep, blood products etc. Our other problem is, you can not 'kill' a prion. First off all it isn't alive, and secondly, it refuses to unbind itself. They have tried freezing, heating, irradiating it and subjecting it to all kinds of loud music, and it will not give up its shape, or mission. I make light of it, but it is a serious problem, and won't get any less serious unless we admit how serious of a problem it is.

I try not to think about it. I have other issues to worry about outliving, besides mad cow.

If you want a brain disease to be concerned about Progressive Multifocal Leukoencephalopathy, PML is more prevalent. It happens when the JC virus which 80% of us carry in our brain, reactivates due to immunosuppressive treatments, mostly TNF blockers such as rituxan, Enbrel or other 'mab' drugs....or the disease AIDS. Lots of TNFs being given out. Chances of PML occuring due to a TNF blocker is greater than Mad Cow in IVIG.

No treatment is without risk. We all have to choose our risk level and take responsibility for what happens. Hopefully, we are all properly informed.

And your doctor was really out of line worrying you to that extent on the Mad Cow. IVIG is very expensive, and the docs have to jump thru hoops to get it for you....perhaps that was his motivation. Gosh i hope not.

Hope you are all well and I would not worry any more.

Thanks about talking about the prions, i agree, just how much, not if! I was given the IVIG 13 years ago, have had many other challenges to over come these past years, do not worry about getting the brain disease-you can not tell if you are getting it, and once diagnosed, nothing can stop it anyway! So I really don't ever give it much of a thought,try to focus on things that I can change.